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odi01
Posted on: Dec 7 2018, 04:16 PM


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https://www.fool.com.au/2018/12/07/3-small-...to-buy-today-2/
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odi01
Posted on: Dec 7 2018, 04:14 PM


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https://www.fool.com.au/2018/12/07/why-the-...up-111-in-2018/
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odi01
Posted on: Dec 5 2018, 03:15 AM


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https://finance.yahoo.com/news/avita-medica...-074600689.html
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odi01
Posted on: Dec 4 2018, 07:27 PM


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https://www.change.org/p/licht-f%C3%BCr-all...amp;utm_term=cs

Please also sign for James in England! Please sign for James!

4. DEC. 2018 —

Please sign for James!

EPP patients in England fear that they will not get access to Afamelanotide - although it is the only therapy!

The reason for this is the scandalous situation at the NICE (National Institute for Health and Care Excellence), which decides which therapies should be available in England - and which not. In the case of EPP, for example, the responsible representatives of the authority simply claim that the therapy has only a minimal benefit. However, the authority ignores the fact that the efficacy has been demonstrated in several large clinical trials and, even worse, it simply ignores the experiences of those affected: EPP patients have repeatedly stressed the life-changing effects of the treatment during negotiations with the authorities. Numerous German patients have also submitted impressive statements and described the disease but also the effect of the treatment, but NICE still remained negative. It is also frightening that the responsible representatives of the authority expressed the opinion in a public meeting that EPP does not represent any restriction - "one would not look at the patient externally".

The International Porphyria Patient Network (IPPN), which I co-founded, supports British patients in the negotiations. In July, together with other complainants at a public meeting, I discussed the matter with the decision-makers and criticised the rejection of the therapy. The independent committee that judged the objections raised proved us right in several respects - among other things, the efficacy of the therapy cannot be rated as "small". In addition, EPP should be seen as a massive restriction (see also last update). The evaluation is now being reopened - but again NICE has the last word and we can only hope that the patients and our arguments are actually taken seriously now.

James lives in England and is directly affected by the outcome of the negotiations. His mother, Claire Creag, has launched a petition on change.org. Please also support your James so that he and all EPP patients in the UK can soon have access to Afamelanotide and lead a normal life without fear of light and burning pain:

https://www.change.org/p/theresa-may-mp-fun...phyria-patients


https://www.nice.org.uk/guidance/indevelopm...10009/documents
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odi01
Posted on: Dec 2 2018, 04:28 AM


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https://www.change.org/p/theresa-may-mp-fun...phyria-patients
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odi01
Posted on: Nov 27 2018, 12:35 AM


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http://www.clicmedicina.it/porfirie-luce-sole/

Porphyria: when sunlight scares you

Porphyria is a group of rare and little-known hereditary metabolic diseases linked to a deficiency of one of the different enzymes in the heme metabolic chain. The variety of their symptoms makes them particularly complicated to diagnose: they are characterized by neurological manifestations (called neurovisceral attacks), skin lesions due to photosensitivity or the combination of the two.

"The main problem for patients is political and administrative: we need models of care adapted to the uniqueness of the disease," explains Dr. Gerardo Tiso. "A clear, transparent and homogeneous diagnostic and therapeutic path is essential throughout the country, for chronic and acute porphyria. For erythropoietic protoporphyria, the needs to be urgently considered are the insufficiency of treatments in place and their geographical disparity. For patients with acute porphyria, on the other hand, one of the great problems is that of being treated by experienced people when they appear in the emergency rooms of our hospitals: they live with the fear of suffering irreparable damage and have difficulty in relating to the doctors on duty.

Fortunately, for these diseases, research is progressing: "At the moment, the development of new very promising drugs for the treatment of patients with acute porphyria is proceeding and phase three studies with gyrosivan are underway," says Prof. Paolo Ventura. "Also for erythropoietic protoporphyria today there is a drug, called afamelanotide, which is implanted under the skin at the iliac crest under local anesthesia," adds Dr. Luca Barbieri, of the Center for Porphyria and Rare Diseases of the San Gallicano Dermatological Institute IFO IRCCS in Rome.

For these diseases, since 2016 is active the association named after Domenico Tiso, pediatrician from Livorno great expert in porphyria, from which the same doctor was affected.

Translated with www.DeepL.com/Translator
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odi01
Posted on: Nov 27 2018, 12:18 AM


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https://www.dasinvestment.com/mischfonds-pl...s-auf-der-spur/

However, Clinuvel Pharmaceuticals from Melbourne, Australia, is number 1 in the portfolio and its share price roughly doubled in the third quarter.
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odi01
Posted on: Nov 16 2018, 03:38 PM


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BUZZ-Australia's Avita Medical climbs after commencing Recell deliveries
reuters.com · 16.11.2018, 03:52:48
** Shares of regenerative medicine company Avita Medical Ltd rise as much as 9.88 pct to A$0.089, their highest in a week
** Stock posts its biggest intraday pct gain since Oct. 18
** Company says https://bit.ly/2QR1agJ 32 U.S. burns centres have commenced ordering and taking deliveries of its Recell System
** Company also completes hiring of the U.S. sales team to support the U.S. market launch of the Recell System
** Avita Medical received U.S. FDA approval for its Recell system in September
** Avita's Recell system is a device used to treat severe thermal burn injuries using the patient's own skin samples
** Stock had risen 28.6 pct this year, as of last close
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odi01
Posted on: Nov 16 2018, 04:37 AM


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https://www.informa.com.au/event/conference...ions-australia/


Speakers

Nicoletta Muner
Director, Global Regulatory Affairs', CLINUVEL PHARMACEUTICALS
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odi01
Posted on: Nov 15 2018, 04:46 PM


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https://mobile.twitter.com/ClinuvelNews/sta...714278245916672
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odi01
Posted on: Nov 13 2018, 12:55 AM


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https://vis2018.org/sponsorship/
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odi01
Posted on: Nov 12 2018, 03:11 AM


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Wrong direction

Kräuter demanded more nursing and medical staff, regular supervision, spatial improvements and an end to fixations in multi-bed rooms: "These are unacceptable." Kräuter sees a "change" in child and youth welfare that is going in the wrong direction: Different regulations would worsen the situation.

Moreover, it is still not clear why in Styria, after Vienna, most of the children are accommodated in other places, and one has to get to the bottom of this. Social Councillor Doris Kampus (SPÖ) has already announced an investigation, which he welcomes. Kräuter also warned against refusing medical treatment on cost grounds. He mentioned the case of a Styrian who suffers from the so-called shadow-jumper disease.

About 60 patients are known throughout Austria. According to the Ombudsman, the costs for a drug available since 2014 amount to about 60,000 euros per year. While the medicine was approved for two other patients, the KAGes rejected the treatment of the Styrian with the medicine. In a statement to the Ombudsman's Office, the KAGes compared the "additional benefit of the medication with the costs to be incurred". "You must never come up with cost arguments when it comes to pain," said Kräuter.

.......
About 60 patients are known throughout Austria


https://mobil.derstandard.at/2000087129208/...emeindefusionen
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odi01
Posted on: Nov 12 2018, 03:03 AM


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SHADOW JUMPING DISEASE - WHO PAYS FOR THE THERAPY?


Shadow Jumping Disease or Erythropoietic Protoporphyria (EPP) is the name of the rare disease from which a Styrian suffers. In order to alleviate his suffering, he needs a medication that is neither paid for by the regional health insurance fund nor by the hospital operator.

A Styrian suffers from the so-called shadow-jumper disease. The very rare genetic metabolic disease manifests itself in painful sensitivity to light. Despite the protection of long clothes, gloves and scarves, a prolonged stay in the sun leads to severe pain on the skin. The number of people affected is low. Experts speak of just over 30 people in Austria.

The only effective medication in the case of the Styrian is called Scenesse. Scenesse is injected into the hospital in the form of an implant and costs around 14,000 euros per treatment. Depending on the number of treatments, the costs amount to around 60,000 to 80,000 euros per year. Health insurance companies and hospital owners consider the other to be obliged to pay for the treatment.

In the ORF programme "Bürgeranwalt", Volksanwalt Kräuter explains how this lack of clarity about bearing the costs arises. In Austria, the drug is administered exclusively in two clinics. According to the Main Association of Social Insurance Institutions, the costs of treatment in hospitals are borne by the hospital operator or the state funds. The hospital operator in turn believes that this type of outpatient treatment would justify cost coverage by the regional health insurance funds.

"The patient becomes again once the play ball of the authorities and remains with its suffering on the distance! It cannot be that the costs for a patient are carried by the hospital and with the next not!

Ombudsman G?nther herbs demands clear authority structures, so that the citizens and citizens are not exposed to an authority arbitrariness. The public prosecutor's office will strive for a renewed examination of the individual case with the hospital carrier


http://volksanwaltschaft.gv.at/artikel/sch...lt-die-therapie
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odi01
Posted on: Nov 9 2018, 03:45 AM


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EPP at the World Congress in Barcelona


8TH NOV. 2018 —

Although Afamelanotide is approved in the EU, most EPP patients have no or only limited access: After approval, national authorities in each individual EU country re-evaluate the documentation and decide whether the drug should also be available in that country. This can make sense if several existing therapies are to be compared with each other. It becomes problematic, as in our case, when it comes to the first and only treatment. Then these additional assessments often lead to years of delays in access or, in the worst case, even to negative decisions - although there is no alternative!

EPP patients from Germany, Italy and Switzerland are using the example of the national assessment of afamelanotide in England to draw attention to this absurd situation at the European World Congress on Medicinal Products for Rare Diseases in Barcelona.



https://www.change.org/p/licht-f%C3%BCr-all...amp;utm_term=cs
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odi01
Posted on: Nov 2 2018, 06:43 PM


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http://www.time.com/5442802/palau-sunscreen-ban-coral-reef/
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odi01
Posted on: Oct 18 2018, 04:09 PM


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https://www.businesswire.com/news/home/2018...LL%C2%AE-System
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odi01
Posted on: Oct 17 2018, 05:30 AM


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https://www.businesswire.com/news/home/2018...um-Presentation
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odi01
Posted on: Oct 13 2018, 12:05 AM


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https://www.change.org/p/ein-leben-ohne-son...amp;utm_term=cs
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odi01
Posted on: Oct 11 2018, 04:24 PM


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https://kalkinemedia.com/2018/10/10/clinuve...ion-in-england/
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odi01
Posted on: Oct 10 2018, 07:12 PM


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https://www.finnewsnetwork.com.au/archives/...work200884.html
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odi01
Posted on: Oct 10 2018, 05:42 PM


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https://www.change.org/p/ein-leben-ohne-son...amp;utm_term=cs
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odi01
Posted on: Oct 7 2018, 09:45 PM


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https://www.gofundme.com/prayers-for-krysztian-groom


https://ktxs.com/news/nation-world/6-year-o...ing-set-on-fire
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odi01
Posted on: Oct 7 2018, 07:28 PM


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https://clinicaltrials.gov/ct2/show/NCT0362...recrs=abdefghim
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odi01
Posted on: Oct 7 2018, 06:33 PM


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https://foxillinois.com/news/local/6-year-o...dure-10-05-2018
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odi01
Posted on: Oct 7 2018, 06:23 PM


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https://www.smh.com.au/money/investing/dine...005-p507x1.html
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odi01
Posted on: Oct 4 2018, 07:06 PM


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https://eu.vcstar.com/story/news/local/comm...ent/1449404002/
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odi01
Posted on: Oct 4 2018, 05:48 PM


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https://www.baseballdailydigest.com/2018/09...fitzgerald.html
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odi01
Posted on: Oct 4 2018, 01:08 AM


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https://www.nasdaq.com/press-release/nasdaq...-20180928-00518


https://edge.media-server.com/m6/p/34dvbwgm...970/st/clinuvel
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odi01
Posted on: Sep 30 2018, 03:59 AM


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https://www.smh.com.au/money/investing/elli...928-p506kx.html
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odi01
Posted on: Sep 30 2018, 02:43 AM


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https://www.change.org/p/9945077/u/23341035...59882&jb=41

29. SEP. 2018 -

In the episode 156 of "In der Freundschaft", the photodermatitis EPP (erythropoietic protoporphyria) and the treatment with afamelanotide are depicted in great detail! The attentive doctors even think to turn off the lights in the room, as the artificial light could harm their patient.

Informing people about EPP via popular media is extremely important and helpful because many sufferers still receive the correct diagnosis very late in life and often are not taken seriously in their own needs. Therefore, a big thank you to the sensitized for rare diseases young medical profession Sachsenklinik;)
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odi01
Posted on: Sep 28 2018, 05:04 PM


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https://finance.nine.com.au/2018/06/25/18/4...w-drug-scenesse
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odi01
Posted on: Sep 22 2018, 03:07 PM


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https://scrip.pharmaintelligence.informa.co...n-Drug-Scenesse
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odi01
Posted on: Sep 14 2018, 12:28 PM


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http://martinshkreli.com



Sorry I haven’t posted in a while. I was (and still am) busy reading about rare diseases.........???
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odi01
Posted on: Sep 14 2018, 02:53 AM


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https://www.basellife.org/basel-life-2018/b...bal-health.html

12.45
Developing new products for vulnerable populations in high income countries – the case of erythropoeitic protoprophyria
Jasmin Barman-Aksözen (Stadtspital Triemli, Zurich, Switzerland
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odi01
Posted on: Aug 29 2018, 03:48 PM


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https://expansion.mx/tendencias/2018/08/28/...roteccion-solar
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odi01
Posted on: Aug 23 2018, 01:17 AM


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https://clinuvel.us19.list-manage.com/track...mp;e=40713266c1
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odi01
Posted on: Aug 21 2018, 12:39 PM


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https://kalkinemedia.com/2018/08/21/5-austr...yp-tlx-and-bot/
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odi01
Posted on: Aug 8 2018, 11:48 PM


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https://www.instagram.com/p/BmOE0YDjbUF/?ut...d=1mc5yuy4qldql
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odi01
Posted on: Aug 1 2018, 01:09 PM


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https://stockhead.com.au/health/us-roadbloc...velopments/amp/
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odi01
Posted on: Aug 1 2018, 04:42 AM


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https://www.sat1.de/tv/endlich-feierabend/v...m-schatten-clip
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odi01
Posted on: Jul 20 2018, 10:41 PM


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https://www.cnn.com/2018/07/20/health/sunsc...pill/index.html
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odi01
Posted on: Jul 17 2018, 04:23 PM


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https://www.asx.com.au/asx/statistics/displ...;idsId=02000189
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odi01
Posted on: Jul 4 2018, 02:50 PM


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https://www.asx.com.au/asx/statistics/displ...=pdf&idsId=
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odi01
Posted on: Jul 3 2018, 02:43 PM


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https://finfeed.com/features/sun-shines-sma...s-are-battered/
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odi01
Posted on: Jul 3 2018, 02:19 AM


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https://youtu.be/lLkLuc8rUUw
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odi01
Posted on: Jun 28 2018, 03:34 PM


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https://www.dermatologyadvisor.com/general-...article/776688/
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odi01
Posted on: Jun 26 2018, 02:54 AM


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https://www.onvista.de/news/original-resear...h-buy-103926105
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odi01
Posted on: Jun 26 2018, 02:43 AM


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http://www.more-ir.de/d/16649.pdf
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odi01
Posted on: Jun 25 2018, 07:36 PM


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https://www.minussinus.de/2018/06/25/clinuv...19-zu-erwarten/


Clinuvel Pharmaceuticals announced last night that it has submitted the regulatory filings for its Scenesse drug to the US Food and Drug Administration (FDA). By the end of August, the FDA will decide whether to apply a Priority Review; after that it takes 6-10 months to reach the final decision. This means that US approval is expected from the beginning of March to the end of June 2019!

The details of the announcement can be found here:

https://www.asx.com.au/asxpdf/20180625/pdf/...0mgrl4csb10.pdf

After a number of delays in recent years, this is one of the first important events Clinuvel has kept his word for - a clear indication that both the maturity of the Scenesse product and that of the management and organization over the years have come to an end Time has increased significantly.

The next few months remain eventful: at the end of July there will be quarterly figures for Q4 2017/18 (ending on 30.06.2018) - here I expect record sales and cash flows by expanding the treatment of EPP patients, especially in Germany (Ramp-up of the treatment center Dusseldorf) and Switzerland (where meanwhile all patients in need of treatment have confirmed reimbursements by the health insurance).

In addition, there is still the announced topical product line before publication, so a preparation that acts by applying over the skin. I remain skeptical as to whether this can really be a product that contains afamelanotide as an active ingredient (since the molecule is very large and barely able to cross the skin barrier), but it will certainly give an indication of where the company is heading would like to develop.

Today is fittingly World Vitiligo Day, on the occasion of a conference in the United States takes place. Clinuvel is also active as a sponsor. Anyone interested in the condition of vitiligo, the state of research and treatment options for patients should refer to the book by Yan Valle, the CEO of the American Vitiligo Research Foundation:

Regarding my rating, nothing fundamental changes, I stay with a target price of 21-24 EUR. With a successful NDA decision, I would probably lower the cost of equity because of the lower risk, and that would lead to a much higher valuation.


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odi01
Posted on: Jun 25 2018, 02:17 PM


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https://www.fool.com.au/2018/06/25/why-the-...ocketing-today/
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odi01
Posted on: Jun 25 2018, 03:40 AM


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NEW TO THE PETITION
Do not be afraid of the summer
Swiss Society for Porphyry - www.porphyria.ch
JUNE 24, 2018 - The summer is here and, fortunately, all Swiss EPP patients who require afamelanotide have received the reimbursement of the treatment from their health insurers. We can thus look forward to the summer with much less fear of painful phototoxic reactions and enjoy it together with partners, family and friends. After many challenges and with the help of many supporters we are very happy to have reached this goal ... for this year ... because we still live with the uncertainty about whether or not we will be provided with this therapy in the long term and sustainably - Unfortunately, there is a systemic error in the annual and arbitrary case-by-case decisions - Policy and competent authorities are still called upon to remedy this systemic error and eliminate this treatment bias against those affected by rare diseases. This also means that we will continue to fight to bring about these much-needed changes in our health care system!

Andreas Wildi, SGP lawyer, has written a very good article in the NZZ on this problem (see link) - worth reading!

With sincere wishes for a healthy, painless and beautiful summer!

https://www.change.org/p/6935921/u/22923864...259882&jb=7
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odi01
Posted on: Jun 23 2018, 12:34 AM


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https://ih.advfn.com/stock-market/USOTC/cli...-pc-CLVLY/chart
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odi01
Posted on: Jun 19 2018, 02:35 AM


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June 2018

Sun full of summer ....... More and more patients are starting to enjoy it thanks to the treatment. It is even more important that patients without treatment receive such a treatment in order not to suffer anymore and that a care concept is developed for children and adolescents.

http://www.epp-deutschland.de/index.html
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odi01
Posted on: Jun 18 2018, 12:15 PM


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https://stockhead.com.au/health/ma-watch-wh...ech-sector/amp/
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odi01
Posted on: Jun 14 2018, 03:04 PM


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Tucson Tech: UA licenses drugs to help prevent skin cancer The University of Arizona is moving to commercialize two faculty-invented drug compounds that could help protect people from sun damage and skin cancer by boosting the skin’s natural pigment. The chemical compounds, developed by professors Minying Cai and Victor Hruby in the UA department of chemistry and biochemistry, were recently licensed to startup MCR Therapeutics, formed by Cai and Hruby last year. Hruby is a regents professor emeritus who has been involved in several drug startups, and Cai is a longtime drug researcher who joined the UA in 1999 as a research scientist and has been a research professor since 2007. Each hold appointments in the College of Science and the College of Medicine and are members of the Arizona Cancer Center and the UA Bio5 Institute. The peptides developed by Cai and Hruby target certain melanocortin receptors, which stimulate the natural production of skin cells that produce melanin — the pigment responsible for skin color that provides protection against harmful ultraviolet light. With 3 million new cases diagnosed each year, skin cancer is one of the most common and deadly cancers. More than 9,300 people are expected to die from the disease in 2018 in the U.S. alone. The new drugs could help protect people from skin cancer as a more effective alternative to traditional sunscreens. Sunscreen lotions can prevent skin damage from ultraviolet radiation, but they are often applied incorrectly, can easily wash away and are only partially effective compared to natural tanning or pigmentation, Hruby said. Drugs based on the new peptides could be administered via a nasal spray, intraperitoneal injection into the body cavity or perhaps a skin patch, Hurby said. Though the peptides have shown promise in preclinical studies, they would still need to go through a series of human clinical trials to win regulatory approval. Hruby said he and Cai are talking with two companies about partnering or collaborating with them to push the research forward. “We think were within one or two years of clinical trials, all we have to do is get a partner to do the necessary things with the FDA,” he said. Melanocortin receptors are known to play a role in other physiological aspects such as obesity, stress, cognition and mood, but MCR plans to initially focus on skin. Cai and Hruby have worked together for years on drugs that target melanocortin receptors. In 2016, the pair licensed a startup company to develop a drug that showed promise in treating acute depression and related ailments by blocking the receptors. And this isn’t the first time Hruby has shepherded a melanin-boosting drug to market. In the 1980s, Hruby and another UA professor, the late Mac Hadley, invented a skin-darkening compound, afamelanotide, later known as Melanotan I, that was licensed to an Australian company. The company, now known as Clinuvel, won European approval of the drug labeled as Scenesse to treat patients with erythropoietic protoporphyria, a rare disease that causes severe inflammation of the skin with exposure to sunlight. A related drug known as Melanotan II is widely and illegally sold on the internet as an injectable tanning agent sometimes called the “Barbie drug.” It is banned in the U.S., Canada and Europe because it has not undergone proper testing and is known to cause serious side effects. Hruby said the new peptides he and Cai have developed differ from the earlier compounds because they are selective in their action and hence don’t cause problematic side effects. The research team worked with Tech Launch Arizona, the office of the UA that commercializes inventions stemming from UA research, to patent the technologies and advanced their business plan through the National Science Foundation I-Corps program. They also received TLA asset-development funding to help ready their product for market.

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odi01
Posted on: Jun 14 2018, 02:41 PM


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Tucson Tech: UA licenses drugs to help prevent skin cancer
Arizona Daily Star-vor 2 Stunden
The company, now known as Clinuvel, won European approval of the drug labeled as Scenesse to treat patients with erythropoietic

Site locked for Europe
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odi01
Posted on: Jun 14 2018, 02:31 PM


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https://tucson.com/business/tucson-tech-ua-...23e3c96ec1.html
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odi01
Posted on: Jun 14 2018, 04:19 AM


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Updated28 July 2014



https://www.smh.com.au/business/clinuvel-re...0728-zxlj6.html
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odi01
Posted on: Jun 6 2018, 04:04 PM


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Clinuvel Pharmaceuticals Limited (ASX: CUV)

No well-diversified Gen Y share portfolio would be complete without a biotech company, and while most will consider CSL Limited (ASX: CSL) to be on the expensive side, emerging players like Clinuvel Pharmaceuticals could be a consideration.

This $570 million market cap company appears to be kicking goals of late, with its focus on drugs for severe skin disorders gaining traction as Clinuvel manages to report positive cash flow of $230,000 for the quarter ending March 31, 2018, despite continued research and development efforts for its novel drug SCENESSE.

Clinuvel looks to operate in a financially disciplined manner and labels itself a “pioneer” in the photomedicine space.

One to watch for sure.
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odi01
Posted on: Jun 6 2018, 03:58 PM


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https://www.fool.com.au/2018/06/06/5-under-...on-y-investors/
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odi01
Posted on: May 28 2018, 10:11 PM


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In Germany, around 800 people are registered. Experts believe that many more are not yet diagnosed, because even doctors often do not know the disease and therefore misinterpret signs. "The biggest problem was that you did not know my illness," complains Braun. Like all sufferers, she was desperately searching for years for the cause of her pain. She often met with incomprehension, nobody believed her.
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odi01
Posted on: May 16 2018, 11:36 PM


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Eu tenho vitiligo, e daí?
VEJA.com-11.05.2018
O Scenesse, como foi batizado pelo fabricante, o laboratório australiano Clinuvel, libera afamelanotide, um composto que ativa a célula ...


https://veja.abril.com.br/revista-veja/eu-t...vitiligo-e-dai/
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odi01
Posted on: May 15 2018, 02:53 PM


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http://barman.de/Eurordis_poster_05_2018_dechant.pdf
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odi01
Posted on: May 15 2018, 02:46 PM


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https://www.change.org/p/9945077/u/22746830...59882&jb=43
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odi01
Posted on: May 7 2018, 05:30 AM


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http://www.watoday.com.au/money/investing/...504-p4zdef.html biggrin.gif
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odi01
Posted on: May 4 2018, 02:56 AM


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http://clinuvel.com/social-media/subq/slip-slop-slap
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odi01
Posted on: May 2 2018, 04:18 AM


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Epp Youtube Chanel

https://www.youtube.com/channel/UCEQZAj_4gHTJYxDW79zGX_Q
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odi01
Posted on: Apr 30 2018, 07:52 PM


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https://www.change.org/p/6935921/u/22694682...259882&jb=7
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odi01
Posted on: Apr 28 2018, 12:41 AM


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https://youtu.be/IyyOJ3B3UUk

Porphyria Awareness Week 2018
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odi01
Posted on: Apr 27 2018, 11:58 PM


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https://www.instagram.com/p/BiEzf5UBTgs/?r=wa1
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odi01
Posted on: Apr 27 2018, 01:19 PM


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https://www.fool.com.au/2018/04/27/2-asx-li...-excited-about/
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odi01
Posted on: Apr 26 2018, 06:19 PM


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new investors ?

DFA Asia Pacific Small Company Series 30.56K 0.06% 0 0.01% 01/31/18
Smith & Williamson Unit Trusts - Oriental Growth Fund 30.44K 0.06% 0 1.03% 01/31/18
Dimensional Fund Advisors LP 41.84K 0.09% 9.53K 0% 01/31/18


http://www.barrons.com/quote/stock/us/ootc/clvly
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odi01
Posted on: Apr 25 2018, 12:00 AM


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https://www.instagram.com/p/Bh9IidMhLIh/?r=wa1
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odi01
Posted on: Apr 21 2018, 12:05 AM


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https://www.instagram.com/p/BhyxjITg7iL/?r=wa1

https://www.instagram.com/p/BhyPBsqATls/?r=wa1
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odi01
Posted on: Apr 20 2018, 05:02 PM


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Takeda, I hope not, Takeda already took me Ariad Pharmaceuticals
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odi01
Posted on: Apr 19 2018, 08:08 PM


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The Handelsblatt is the highest-circulation German-language business and financial newspaper. It has around 200 editors and correspondents worldwide. With a circulation of 125,860 copies sold, the Handelsblatt reaches more than half a million readers daily (AWA 2012). [10] The Handelsblatt is the most cited economic medium in Germany (Media Tenor, 2004-2011).

https://de.m.wikipedia.org/wiki/Handelsblatt
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odi01
Posted on: Apr 19 2018, 07:57 PM


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http://www.handelsblatt.com/finanzen/anlag...en/8846146.html


Trader Christoph Neemann trades in his Wikifolio "Minus Sinus Value Select" shares, which in his opinion have a sufficient distance to the fair value, the so-called "Margin of Safety" exhibit. What is important for him is that he buys shares from companies whose business model and risks he can assess. For his trading idea, Neemann reserves the right to implement them with ETFs or funds. He waives leveraged products.

Given the prevailing market conditions, Neemann concentrates on a few stocks that he singles, as in the case of Clinuvel (plus 47 percent since purchase), relatively high weighted. Since its creation in September 2016, the Wikifolio has achieved a plus of 50 percent with a maximum loss of 13.4 percent. The index value of Wikifolios has grown three times faster compared to the MSCI World Index. Investors have invested in the associated Wikifolio index certificate so far about 11,000 euro
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odi01
Posted on: Apr 18 2018, 07:46 PM


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18th APR. 2018 - Good report followed by a conference talk with the cardiologist and EPP patient dr. Cornelia Dechant on Austrian Radio ORF 2 on the situation of Austrian patients. Dr. Dechant advocates access to afamelanotide for all those affected in Austria and addresses the challenges and treatment in Austria. Report and design: Sonja Hochecker. With the participation of the Swiss Society of Porphyria.


https://www.change.org/p/9945077/u/22649013...59882&jb=43
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odi01
Posted on: Apr 11 2018, 11:41 PM


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https://www.wallstreet-online.de/nachricht/...-abstand-halten

Class instead of mass

Given the prevailing market conditions, Neemann concentrates on a few stocks that he singles, as in the case of Clinuvel (+47 percent since purchase), relatively high weighted.
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odi01
Posted on: Apr 8 2018, 12:33 AM


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Pluto continues to grow, from 4.12% to 4.82%

https://www.plutos.de/plutos-multi-chance-fund/
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odi01
Posted on: Mar 22 2018, 05:10 PM


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https://drive.google.com/file/d/1qf4Qwjg8sM...iew?usp=sharing
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odi01
Posted on: Mar 22 2018, 05:02 PM


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http://www.policlinico.mi.it/uploads/fom/a...ta_clinuvel.pdf
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odi01
Posted on: Mar 19 2018, 12:55 AM


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Good Postings in Germany

https://www.wallstreet-online.de/diskussion...maceuticals-ltd
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odi01
Posted on: Mar 18 2018, 05:30 AM


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https://www.zoominfo.com/p/Daniela-Schaefer/1822170687
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odi01
Posted on: Mar 18 2018, 05:27 AM


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http://www.thepictaram.club/p/clinuvel

Fron Wallstreet online. de
Thanks Walltrader2014
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odi01
Posted on: Mar 9 2018, 12:49 AM


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MARCH 8, 2018 - On the day of the rare diseases organized by Proraris and the Inselspital in Bern on March 3, 2018, Dr. Ing. Rocco Falchetto, President of the Swiss Society of Porphyria, gave an interesting update on the situation regarding compensation of afamelanotide in a short presentation. You can see the video of it on this Vimeo link:

http://vimeo.com/258424697


https://www.change.org/p/6935921/u/22479655...259882&jb=7
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odi01
Posted on: Mar 4 2018, 04:46 PM


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From wallstreet-online.de

https://m.jobsdb.com/en-sg/search.do?JSRV=1...amp;JSSRC=SRLSC

VALLAURIX PTE. LTD. The selected candidate will join a global biopharmaceutical company focused on developing drugs for the treatment of a range of disorders. The company has identified patient populations with specific clinical needs. Personal Assistant to Director 02-Mar-18 jobsDB Ref. JSG400003003540618 Employer Ref. 6330498 We are looking for a responsible Personal Assistant to provide personalized secretarial and administrative support in a well-organized and timely manner. You will work on a one-to-one basis on a variety of tasks related to manager’s working life and communication. Position open to Singaporean only. Career Level:Entry Level Yr(s) of Exp:3 years Qualification: Diploma Industry: Accounting / Audit / Tax Services Job Function: Professional Services > Company Secretary Zonal Segregation: No Fixed Location Salary:Salary provided Employment Type: Full Time

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odi01
Posted on: Feb 28 2018, 08:56 PM


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https://www.change.org/p/ein-leben-ohne-son...utm_term=266724

Rare Disease Day - Journée des maladies rare - Giornata delle malattie rare
Swiss Society for Porphyry - www.porphyria.ch
28th FEB. 2018 - On the occasion of the Rare Disease Day, Triemli City Hospital highlights an EPP article published recently in the GlücksPost: "When light hurts" - we look forward to seeing you all!
We continue to fight for treatment justice among EPP patients and other rare disease sufferers!
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odi01
Posted on: Feb 28 2018, 08:50 PM


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https://www.glueckspost.ch/gesundheit/wenn-licht-wehtut/


Erythropoietic protoporphyria
When light hurts
Low-light months like January are a relief for people who suffer from light sickness. Because then they have more time to go outside without harming them.

A beautiful winter landscape, snow and sunshine - for the molecular biologist Dr. Jasmin Barman (38) was a scary idea for most of her life. Your skin can not tolerate the sun's rays. Like fire under the skin, it feels like it's going to be exposed to the sun too long anyway. And too long can be a few minutes.

Erythropoietic protoporphyria (EPP) is the name given to the condition associated with such symptoms. A metabolic disorder where the production of red blood pigment does not work properly. Jasmin Barman has been suffering since early childhood. Even as a baby she cried when she was exposed to the sun - why, nobody knew then. A sun or light allergy was finally accepted - but with an allergy the whole thing has nothing to do. Also psychological reasons were suspected, and not infrequently it was also suspected of the simulation. It took decades for her to come to grips with her illness, especially through her own persistent research. Today she is researching her at the Triemlispital in Zurich.

Pain under the skin

EPP is one of the rare diseases - it affects about one in every 100,000 people. It is estimated that around 80 people in Switzerland suffer from it. In light, an inflammatory reaction develops under her skin, causing a massive pain in the chest. Even body heat from other people is then very painful for those affected, so children push their parents away when they want to take comforting in their arms. "At night, you can not sleep because your own body heat is so painful," says Dr. Barman.

Sunscreens are practically ineffective in EPP, because not the UV radiation causes the problem, but the visible light, especially the blue parts. And when it fires under the skin, and the pain is almost unbearable, painkillers do not help: "You just have to endure the pain." And to prevent, by avoiding the sun, avoid covering the skin with light. A special umbrella, which reflects the sun on the outside and absorbs the rays inside, which in spite of everything gets under the umbrella from the side, was the constant companion of Jasmin Barman for many years. Today she does not always have him with her. Because there is now a drug that allows EPP sufferers a nearly "normal" life! What that means, can only be measured by someone who has experienced it himself. "It's like a new life," says Jasmin Barman.

Dangerous energy-saving lamps

In the beginning she could hardly believe it herself. "I was very skeptical," she says. At first she ventured into the sun for only a few minutes, carefully feeling her way to the new freedom. Then she became more courageous. Although she has never ventured into a swimming pool until now, and on the bus she knows exactly where she sits down best. But by now she has even fulfilled her dream of seeing the sequoias in California: "In August 2015, my husband and I made a wonderful trip through the United States. That would have been unthinkable without the treatment. "

Every two months, Jasmin Barman needs a dose of the drug that is implanted and the carrier dissolves itself after the drug is released. In the winter she even gets by without. "However, I know sufferers who are very sensitive to artificial light sources - especially the light of the new energy-saving light bulbs is very dangerous for us," she says. "Some patients need protection around the year."

However, quite a few people still do not get it - a Swiss health insurance company has not yet paid the costs. "We hope that even the last fund will soon enable their patients to live almost normally with light and joy in the bright season", explains Dr. med. Barman. Not to experience sunlight as an enemy, but to be able to enjoy all the positive aspects that it has for the mind - this happiness would like to treat all those affected: «Just feel the warmth of the sun on the skin and a bright day To be happy instead of having to be afraid of pain, that is so much quality of life and freedom - not just for me, but for my whole environment. »

WHAT IS EPP?
Erythropoietic protoporphyria is a metabolic disorder based on a rare genetic defect that affects blood formation. It expresses itself in an extremely painful sensitivity to light, especially sunlight. The skin is usually nothing to look at. Not the UV radiation causes a burning of the skin, but the blue parts of the light. The liver can also be affected by the disease if too much Protoporphyrin deposits in the liver cells.
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odi01
Posted on: Feb 27 2018, 03:09 PM


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https://www.rarediseaseday.org/events/world
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odi01
Posted on: Feb 27 2018, 03:01 PM


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https://m.tio.ch/ticino/cronaca/1243602/il-...-prezzo-elevato

The drug could change your life, but it is war for the high price
The odyssey of a 35-year-old woman suffering from a serious illness potentially manageable with a medicine that the health insurance does not want to pay
 D. M.
LUGANO - It is a real odyssey that is experiencing A., 35-year-old resident in Ticino affected by a very rare pathology that requires a therapy from the costs to say the least prohibitive. At the origin of the problem there is precisely the assumption of expenses related to the administration of the "Scenesse" medicine, to be paid by the compulsory insurance, for the treatment of erythropoietic protoporphyria (a rare hereditary disease affecting 1 in 150,000 people in the population of Western Europe) of which the insured is affected. Costs that, in recent years, have skyrocketed so much as to push the health insurance to refuse to cover the difference by bringing the case up to the Federal Court.

TICINO
7/50
NO


145946
CANTONE26.02.18 - 16:01 | BED 15'556 UPDATE 19:36
The drug could change your life, but it is war for the high price
The odyssey of a 35-year-old woman suffering from a serious illness potentially manageable with a medicine that the health insurance does not want to pay
 D. M.
LUGANO - It is a real odyssey that is experiencing A., 35-year-old resident in Ticino affected by a very rare pathology that requires a therapy from the costs to say the least prohibitive. At the origin of the problem there is precisely the assumption of expenses related to the administration of the "Scenesse" medicine, to be paid by the compulsory insurance, for the treatment of erythropoietic protoporphyria (a rare hereditary disease affecting 1 in 150,000 people in the population of Western Europe) of which the insured is affected. Costs that, in recent years, have skyrocketed so much as to push the health insurance to refuse to cover the difference by bringing the case up to the Federal Court.

NO

First drug "offered", soon to 25 thousand francs per dose - The medicament, it must be said, despite appearing as the first effective therapy for this type of pathology, does not appear on the list of specialties nor has it been approved by the Swiss Institute for therapeutic agents (Swissmedic). The costs were initially assumed by the manufacturer in the context of a "compassionate use program" and then by sickness insurance for an amount of 6,560 francs per dose for 4 or 5 doses per year.

The surge in costs and the braking posed by Intras - Following the increase in the price of the medicine to 18,989 francs for 2016-2018 and 24,772 francs from 2019, the Intras health insurance recognized the reimbursement up to 6,560 francs per dose 4 times a year and, starting from November 2016, only 80% of this price.

On 21 September 2016, the Ticino Cantonal Insurance Court partially upheld A.'s appeal and ordered Intras to reimburse the insured for 4 doses of the medicine at a price of 18'989 francs each.

The appeals - Both Intras and A. (the latter did not consider it sufficient) have appealed to the Federal Court which partially upheld the appeals and referred the case to the Cantonal Court for a new decision.

Insufficient investigations - In short, the TF, after having recognized the therapeutic usefulness of the medicine to treat the pathology in question, considered that in the specific case the investigations carried out by the cantonal courts were insufficient to verify if the medicine was of real benefit for the insured and to establish how many annual Intras administrations were to be administered.

The Federal Court then referred the case to the Cantonal Court for a new appraisal. Too bad that, when asked several doctors and institutes specialized in the subject, no one has accepted to draw up the required expertise (who did it was rejected by one of the parties involved). The only doctor that the Cantonal Court was able to find was the attending physician of A. Based on the statements of the latter, Intras was ordered to reimburse 4 implants a year. For health insurance, however, the therapeutic usefulness of the medicine has not yet been ascertained. For the insured, however, the number of plants repaid would be insufficient. And here are the new appeals.

No turning point - The Federal Court found itself having to decide from a standstill. Noting that the Cantonal Court did not carry out the judicial review as requested (and was unable to establish the number of annual administrations if necessary), it then referred the case back to the lower authority for a new decision.
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odi01
Posted on: Feb 22 2018, 04:04 AM


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https://www.glassdoor.de/Bewertungen/Clinuv...en-E1446201.htm

https://www.glassdoor.de/Vorstellungsgespr%...ch-E1446201.htm


https://www.glassdoor.de/Vorstellungsgespr%...QTN_2331571.htm
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odi01
Posted on: Feb 20 2018, 02:31 PM


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https://globenewswire.com/news-release/2018...ositioning.html
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odi01
Posted on: Feb 10 2018, 03:02 AM


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Erythropoietic Protoporphyria: Carina's greatest enemy is the sun
A life-long struggle with a rare metabolic disease

For many people summer is the best season. But for Carina he is above all one thing: painful! She suffers from erythropoietic protoporphyria (EPP), a congenital metabolic disease that causes sunlight to cause severe pain on the skin. Later, the skin may redden and swell.

Barefoot runs Carina along the beach until she reaches the sea. She dives in, swims out with big trains, enjoys the cool water on her skin. And then she has to hurry up: Because the sun is rising - and by then she has to be in the hotel room again. Because when everyone else leaves for breakfast, Carina will read a book behind closed curtains or sleep a little longer. Only in the evening, after sunset, will she go out again.
Even a minute, even in winter ensures that I feel my skin hours later, "said the 36-year-old. "If I spend more time in the sun, I'm in pain for two or three days despite wearing protective clothing." These are sometimes so bad that Carina has to retire to her darkened bedroom. "I do not want to see anyone then, I'm completely exhausted physically, because the pain does not make me relax, let alone sleep."

It started in childhood
The first signs of the rare genetic defect showed in Carina already in the baby age: "I was nine months old, when my parents went with me on vacation to the Baltic Sea. As soon as I was outside, I only shouted. My parents could not figure out what was wrong with me - because the pain is already in EPP when there is nothing on the skin. "When she is two and a half, her parents visit a dermatologist with her. "She referred us to a university hospital - where we got the diagnosis EPP soon afterwards." Quick, as Carina knows today from other EPPs, who have been waiting for decades for the right diagnosis.

All treatment attempts are unsuccessful
Carina is treated with beta-carotene tablets. "It turned my skin orange, but the pain remained." But there is no other therapy for the little-explored disease at that time. So Carina swallows two to six tablets daily. She spends her childhood mainly in the house. When she's playing outside with other kids, she has to put up with the day-long fire on her skin. "At the age of 14, I had enough of tablet swallowing - and discontinued the medication." Since there are no alternatives, Carina researches in the next few years again on their own on the Internet, looking for other victims. "At the beginning of the 20s, I was finally connected to some. It was so good to talk about how other sufferers eased their pain, how they protected themselves from the sun and which doctors they had been to. Added to this was the feeling of not being alone anymore. "In order to further develop contact with other EPPers, Carina becomes a founding member of a self-help association.

I do not give up hope
For four months now, Carina has been trying out a new hormone implant - the only promising therapy on the market today. "Unfortunately, the drug has not helped me yet - my skin is slightly more pigmented, but the pain has remained the same. However, I know from other stakeholders that it did not work with them until after the second or third application, so I have not given up hope yet. A little relief in everyday life would be enough for me ... "

https://www.idee-fuer-mich.de/leben/aus-dem...sonne-4101.html

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odi01
Posted on: Feb 5 2018, 08:19 PM


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https://www.srf.ch/play/tv/puls/video/krank...d5-9d6519bebb29
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odi01
Posted on: Feb 5 2018, 07:19 PM


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https://www.srf.ch/play/tv/puls/video/wie-e...dc-f2e2699e3075
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odi01
Posted on: Jan 30 2018, 08:12 PM


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After Clinuvel's investor relations work has remained at a very low level in recent years, I am delighted that Peter Thilo Hasler, the founder of Research House Sphene Capital (among other things, is the author of stocks: Theoretical fundamentals explained in practice) who has taken up coverage for Clinuvel Pharmaceuticals. In his first extensive analysis, he determined a price target of 31.70 AUD / share (20.67 EUR / share).


Sphene Capital is an independent research house with a focus on smaller companies with a focus on German-speaking countries.

With his initial analysis of Clinuvel Pharmaceuticals, Hasler provides an impressive and comprehensive summary of the current state of knowledge on Clinuvel, the progress in the business, but also numerous contextual information on the diseases addressed, and a detailed financial projection until the year 2032.

While he clearly points out in the text the extended business potential beyond EPP and describes the key drivers, his valuation model is based solely on EPP - he considers EPP revenues and cash flows to be in a phase of market saturation and goes for The steady state (terminal value) of continued high, stable cash flows from EPP, without considering the re-investment of cash flows generated in new fields of application, which would have certainly given the valuation of the current high return on equity valuation. Despite this conservative approach, it achieves a price target of EUR 20.67 per share, which corresponds to a growth potential of 259% (vs. closing price on 29.01.2018 - EUR 5.75). By purely considering EPP without vitiligo, the price target is at the lower end of the range of 20-24 EUR that I have determined.

The essential similarities and differences to my previous evaluation are the following:

Similar sales projection until 2019, then slightly more aggressive than my model (assuming continued Scenesse roll-outs across Europe and US)
no consideration / quantification of vitiligo sales
more realistic consideration of taxes (flat-rate with me, tax allowances from previous losses are taken into account here)
Comparable assumptions on weighted average cost of capital (WACC) in the initial phase, much more optimistic in the later stage (which is realistic in my view, as the risk premium for a well-established company is likely to decline significantly and the high assumed cash cushion reduces the risk)



http://minussinus.de/2018/01/30/erster-una...ursziel-20-eur/
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odi01
Posted on: Jan 30 2018, 07:38 PM


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Anlass der Studie: Initiation of Coverage Empfehlung: Buy seit: 30.01.2018 Kursziel: AUD 31,70 Kursziel auf Sicht von: 12 Monate Letzte Ratingänderung: - Analyst: Peter Hasler The light protection enabler We're initiating coverage of Australian Clinuvel with a buy rating and a price target of AUD 31.70 per share, since we believe investors are not fully factoring in potential opportunities to Clinuvel's long-term growth in the global skin protection market. The orphan disease drug company is dramatically expanding top-line growth in the near-term as we expect the company to expand its global footprint in EPP. Apart from these significant growth opportunities, that even a rare disease like EPP offers, we expect even more in the years to come, since (1) Clinuvel is expected to launch its vitiligo product in 2021e, representing a substantial larger market than the rare disease EPP, (2) the launch of a topical product should make room for the mass market of non-prescription skin care solutions, and (3) Clinuvel could also offer a treatment for various Central Nervous System disorders among them MS, dementia, Alzheimer's, Parkinson's, ALS, or Huntington's. Apart from EPP, none of these growth opportunities have so far been factored in into our company valuation, leaving substantial upside to our price target in the long-term. Die vollständige Analyse können Sie hier downloaden: http://www.more-ir.de/d/16065.pdf

Original-Research: Clinuvel Pharmaceuticals Ltd (von Sphene Capital GmbH): Buy | wallstreet-online.de - Vollständiger Artikel unter:
https://www.wallstreet-online.de/nachricht/...apital-gmbh-buy
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odi01
Posted on: Jan 28 2018, 05:04 PM


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Help in the form of an implant
Dr. Esther Wißmüller, a dermatologist from Munich, confirms that there is a medication in the form of an artificially produced endogenous hormone that is transplanted under the skin in the form of a rod. "The drug stimulates tanning of the skin to protect it."

Markus Dürr also receives this medicine. However, it only lasts eight weeks.
Markus Dürr:"The drug is only available in very few places in Germany. Only advertised institutes for EPP may administer it." In order to preserve the implant, Markus Dürr takes the long way to Zurich, because the nearest institute for EPP in Germany is in Düsseldorf. The assumption of costs for the drug is also problematic. For this reason, Markus Dürr has fought with other patients for approval of the drug at several demonstrations in the past, including in London at the European Medicines Agency and in Berlin. It's not about going on holiday, it's about leading a normal life.

http://grundkurs-online.de/lichtkrankheit-epp/

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odi01
Posted on: Dec 19 2017, 04:39 PM


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https://youtu.be/bJ8U3qr8uZM
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odi01
Posted on: Dec 15 2017, 04:55 PM


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Twelve-year-old Oliver is a shadow jumper. So called sufferers of the rare disease erythropoietic protoporphyria, in short EPP. Shadow jumpers suffer from a genetic defect that leads to painful photosensitivity. On Thursday, November 16, 2017, Oliver reported on the first Regensburg Charity Dinner of the ZSER e.V. to the approximately 80 invited guests in the Ducal Hall from his long ordeal to diagnosis and therapy at the Center for Rare Diseases Regensburg (ZSER). Oliver's story illustrated the challenge of treating rare diseases: there are only a handful of victims of more than 8,000 rare diseases, who can not rely on a nationwide supply network. The purpose of the charity dinner was therefore to promote the work of the Center for Rare Diseases Regensburg in health care and research and to promote it further. Prominent guests of honor of the evening were Eva Luise Köhler, Chairwoman of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases, ski racer Rosi Mittermaier and Christian Neureuther as well as the ZSER patron, actor and director Marcus Mittermeier. Radio and TV presenter Markus Othmer led the evening.

https://www.regensburger-nachrichten.de/new...hl-der-seltenen
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odi01
Posted on: Dec 15 2017, 04:44 AM


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http://www.actasanitaria.com/ipt-abordados...terapeutico-26/
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odi01
Posted on: Dec 14 2017, 03:08 AM


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https://bazonline.ch/leben/gesellschaft/Die.../story/17458605

In Australia, the drug Scenesse has been manufactured for several years. The active substance is a synthetic variant of a hormone called alpha-MSH, which stimulates the skin tanning in the body. Falchetto is taking this implant, which has to be renewed every two months, for several years. "When I first got the medication and then had to go to the sun, I was very scared," he recalls. After an exhausting ten minutes, he noticed that his skin changed nothing. After thirty minutes, there would still have been no symptoms. "Then I was completely overwhelmed by the fact that the active ingredient actually works." Shortly thereafter, he was in the swimming pool for the first time in his life and then dried in the sun for 15 minutes. "I never thought that someday, for me, sun would not only mean pain, but would be warming and soothing. It was like a release from the prison of the disease. "

The drug does not cure EPP people, but acts as a therapy. The European Medicines Agency approved Scenesse 2014 for the treatment of adult EPP patients, but this is not yet the case in Switzerland. That means according to Falchetto a constant fight with the health insurance companies. "I hope so," says Anouschka Zorzetti, "that this fight will soon end and Enya will be able to benefit from the therapy when she is 18." After a moment, she adds, "Maybe then she can finally lead an almost normal life. »
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odi01
Posted on: Nov 30 2017, 03:25 AM


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http://blogs.sciencemag.org/pipeline/archi...izards-any-more
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odi01
Posted on: Nov 22 2017, 01:22 AM


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https://www.statnews.com/2017/11/21/orphan-...t-rare-disease/
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odi01
Posted on: Nov 18 2017, 11:16 PM


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Recommendations from Florian Homm ,Finanzkongress. de

18.11.2017
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odi01
Posted on: Nov 18 2017, 11:12 PM


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https://www.wallstreet-online.de/diskussion...maceuticals-ltd


ODI01 am 18.11.17 14:01:30 Beitrag Nr. 2.167 ( 56.215.446 )
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odi01
Posted on: Nov 10 2017, 02:12 AM


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http://www.epp-deutschland.de/mediapool/21...te_15_45565.pdf
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odi01
Posted on: Nov 6 2017, 06:53 PM


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http://en.boerse-frankfurt.de/stock/Clinuv...ceuticals-share
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odi01
Posted on: Oct 16 2017, 07:46 PM


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Danke für Deinen guten Kommentar, das iggy hier im Board immer etwas verdreht daran habe ich mich im Laufe der Jahre schon gewöhnt, er versteht es nicht ,daß man versucht jede Information die Clinuvel Pharmaceuticals betrifft hier zu veröffentlichen, da es Clinuvel ja selbst nicht auf die Reihe bekommt.Zum Glück habe ich gute Verbindung zu einigen Epp-Patienten und somit bekomme ich wenigstens von diesen sachliche Aussagen zur Krankheit, Behandlung oder neuen Porphyriezentren.
Wäre mal gut wenn Iggy an solch einem Patiententreffen teilnimmt ,und sich die Sorgen und Nöte der Patienten mal anhören würde dann werden ihm vielleicht die Augen geöffnet, daß es nicht immer nur ums Geld geht,es stehen nämlich immer menschliche Schicksale dahinter,am schlimmsten ist immer das Leid der Kinder, die mit dieser Krankheit leben müssen.
Einen schönen Tag noch
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odi01
Posted on: Oct 16 2017, 05:26 PM


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iggy, german is my mother tongue and this video is real, maybe someone is in the forum who speaks German and confirm this, a film about children's epp will soon appear, he was made at the epp meeting in Berlin, I hope you understand my English it is a Google translation, iggy please listen to the people to unsettle
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odi01
Posted on: Oct 16 2017, 04:29 PM


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Posts: 476

It is a German contribution, from Stuttgart, both portray their life without Scenesse and with Scenesse, both explain the complex allocation of Scenesse by the authorities, they want however never again without Scenesse live
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odi01
Posted on: Oct 16 2017, 03:41 PM


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Posts: 476

ask mischa yourself, contact you find in the link, hope you will be happy

http://www.epp-deutschland.de/kontakt-contact.html
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odi01
Posted on: Oct 16 2017, 12:33 PM


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Posts: 476


https://www.google.de/url?sa=t&source=w...vnbE32Ut-_LvH0s

https://www.google.de/url?sa=t&source=w...kkxzROndf7CgaYP

https://www.google.de/url?sa=t&source=w...vB1EY7XKpCod76u


I know that Mischa Dambrowsky has received 4 implants a year
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odi01
Posted on: Oct 15 2017, 04:13 PM


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Posts: 476

Yes, more and more, scenesse is mentioned, and you will never want to do without scenesse
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odi01
Posted on: Oct 14 2017, 03:41 PM


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https://www.bet.com/style/beauty/2017/10/13...injections.html
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odi01
Posted on: Oct 12 2017, 09:54 PM


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Posts: 476

Top 20 Shareholders as at 30/09/2016
CUV
Shareholder Effective Date Capital (%) Shares Notes
J P Morgan Nominees Australia Limited 30/09/2016 20.16 9,622,582
National Nominees Limited 30/09/2016 16.95 8,091,144
HSBC Custody Nominees (Australia) Limited 30/09/2016 13.22 6,310,798
Acn 108 768 896 Pty Ltd 30/09/2016 7.80 3,720,898
Ender 1 Llc 30/09/2016 5.43 2,590,824
Citicorp Nominees Pty Limited 30/09/2016 3.49 1,667,617
Dr Mark Edwin Badcock 30/09/2016 1.76 842,078
HSBC Custody Nominees (Australia) Limited - A/C 2 30/09/2016 1.64 784,143
National Nominees Limited <Db A/C> 30/09/2016 1.46 695,725
Biotech Lab Singapore Pte Ltd 30/09/2016 1.27 604,598
M Badcock And P Chu Superannuation Fund Pty Ltd 30/09/2016 1.05 500,000
BNP Paribas Noms Pty Ltd <DRP> 30/09/2016 1.02 488,259
HSBC Custody Nominees (Australia) Limited-Gsco Eca 30/09/2016 0.85 403,958
HSBC Custody Nominees (Australia) Limited <Euroclear Bank SA NV A/C> 30/09/2016 0.76 364,471
Headstart Global Hold Ings Ltd 30/09/2016 0.71 337,633
ABN Amro Clearing Sydney Nominees Pty Ltd <Custodian A/C> 30/09/2016 0.57 274,033
Merrill Lynch (Australia) Nominees Pty Limited 30/09/2016 0.43 203,959
Mr Davi D John Lewis 30/09/2016 0.42 200,000
Mr David Will Iam Trevorrow 30/09/2016 0.41 195,122
Dr Corinne Ginifer 30/09/2016 0.39 183,849
Total Held by Top 20 Shareholders 79.79 38,081,691


Top 20 Shareholders as at 30/09/2015
CUV
Shareholder Effective Date Capital (%) Shares Notes
J P Morgan Nominees Australia Limited 30/09/2015 23.71 10,564,074
National Nominees Limited 30/09/2015 14.73 6,561,531
HSBC Custody Nominees (Australia) Limited 30/09/2015 10.91 4,860,020
Acn 108 768 896 Pty Ltd 30/09/2015 6.91 3,077,308
Ender 1 Llc 30/09/2015 5.25 2,340,824
Citicorp Nominees Pty Limited 30/09/2015 4.39 1,955,758
HSBC Custody Nominees (Australia) Limited-Gsco Eca -1 30/09/2015 2.46 1,095,241
National Nominees Limited (DB A/c) 30/09/2015 1.33 594,192
M Badcock And P Chu Superannuation Fund Pty Ltd 30/09/2015 1.12 500,000
Dr Mark Edwin Badcock 30/09/2015 1.12 499,335
Headstart Global Aggressive Holdings Ltd 30/09/2015 0.85 379,515
HSBC Custody Nominees (Australia) Limited (Euroclear Bank SA NV A/C) - 2 30/09/2015 0.82 364,736
Headstart Global Holdings Ltd 30/09/2015 0.76 337,633
Biotech Lab Singapore Pte Ltd 30/09/2015 0.68 301,568
Mr Yogi Pty Ltd (MWI Superfund A/C) 30/09/2015 0.55 244,280
Abn Amro Clearing Sydney Nominees Pty Ltd (Custodian A/C) 30/09/2015 0.50 220,691
Mr David John Lewis 30/09/2015 0.45 200,000
Dr. Corinne Ginifer 30/09/2015 0.41 183,849
Dr.Michael James Fish 30/09/2015 0.40 180,361
Rusty Hammer Pty Ltd (Archipelago Holdings SFA/C) 30/09/2015 0.33 148,456
Total Held by Top 20 Shareholders 77.68 34,609,372
Australian Securities Exchange


Read more: http://www.afr.com/research-tools/CUV/shar...s#ixzz4vIICrMf9
Follow us: @FinancialReview on Twitter | financialreview on Facebook
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odi01
Posted on: Oct 12 2017, 08:03 PM


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Posts: 476

Andrea, 52 years old
I
Hello, my name is Andrea, I am 52 years old, have a sister and a brother, of whom my brother and I have the "Erythropoietic Protoporphyrie". I have a healthy son and am a nurse.
With 3-4 years I first had the typical symptoms like swelling, itching, hot and cold at the same time and very strong pain, like burning needles under the skin. My parents looked for me with a doctor after another, various ointments, tablets and teas were prescribed, but nothing really helped. Some relief brought wet washcloths and wet socks, when the feet were affected by barefoot running.
I still remember when I was a child and an aunt was visiting, and with me on a sunny day made a rowing boat trip on a nearby lake. The joy was great, but the next morning I could barely see the whole face and the hands were very swollen and very painful.
In 1977, when I was 13 years old, the EPP was diagnosed with me and my 5 years younger brother at the University Hospital in Innsbruck, during a 14-day hospital stay.
When I was a bit older, around the 20, a friend asked me if I would like to help him at the Aprés Ski Bar. It was very tempting for me to do something that others do. At about 2000m altitude, in good weather, equipped with umbrella, sunscreen and shield cap went loose. But sadly I had to use my hands again and again in the sun (drinks set up) and also noticed soon that it began to tingling and itching. But I did not want to leave my colleagues in the lurch, and I continued for a while. The result was again a sleepless night, with very severe pain in the hands, which turned slightly bluish / reddish and swollen strongly. In addition, I got a bile colic (the gallbladder I had to remove a few years later). I just thought once again, it goes with suncream and umbrella.
In the course of the decades I have arranged with the illness as well as possible, I went on vacation also in countries, in which I "veil" B. in India or in Morocco as Tuareg disguised and have thus very good experiences made. At home, I travel in the summer with long-sleeved blouses and long trousers, but before I go around with umbrella and gloves in the area, I rather prefer to retire to the house or at least in the shadows.
In March of this year, I received my 1st Scenesse implant and could definitely get an improvement. In the next days I get my 2nd implant and am already very excited about the summer.


http://www.eppaustria.at/erfahrungsberichte/
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odi01
Posted on: Oct 12 2017, 07:17 PM


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https://www.change.org/p/ein-leben-ohne-son...259882&jb=7
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odi01
Posted on: Oct 12 2017, 05:14 PM


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http://www.afr.com/research-tools/CUV/shareholders
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odi01
Posted on: Oct 6 2017, 05:39 PM


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http://www.berliner-kurier.de/news/panoram...wunder-28079976

But the method has been strictly forbidden in Germany. Highly controversial melanin syringes are used
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odi01
Posted on: Oct 4 2017, 08:19 PM


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http://www.porphyria.org.uk/?team=antony-fearn
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odi01
Posted on: Oct 3 2017, 06:44 PM


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https://www.linkedin.com/in/tomi-sawyer-0090714/de
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odi01
Posted on: Oct 3 2017, 06:04 PM


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http://peptides-2017.p.asnevents.com.au/da.../abstract/47813
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odi01
Posted on: Oct 1 2017, 02:30 PM


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When I attended the seminar of the Epp patients last weekend, two of Clinuvel's staff members were also present, and they said there would be no discount on Scennesse

I can not read your lies, please stop,iggy
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odi01
Posted on: Sep 30 2017, 11:25 PM


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https://porphyriafoundation.blogspot.de/
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odi01
Posted on: Sep 28 2017, 03:01 AM


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If you want to talk about it - what companies are you currently investing in and what is your investment idea behind it?

We have a very positive opinion on www.clinuvel.com and that for a long time.
What was your best buy ever? (no matter what area)
Ballmaier and Schulz AG became Baader Bank. Valuation went from DM 10 million to DM approximately 4 billion. Had initially about 10 percent of the company.
Matchnet PLC from USD 1 million to approximately USD 400 million
VMR AG from DM 25,000 to over DM 1 billion
ACM from Euro 100,000 to Euro 1 billion.
Short MLP, Bremer Vulkan, WCM, First Calgary ....
Clinuvel Pharmaceuticals will be the next killer. Recommend all times to read the balance sheets and use the pocket calculator.
and so on ...



https://www.thevaluecircle.com/value-perspe...homm-interview/
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odi01
Posted on: Sep 25 2017, 02:57 AM


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Da es kaum Behandlungsmöglichkeiten für EPP Patienten gab und die deutschen Krankenkassen die Kosten nicht übernehmen wollten,das Medikament Scenesse aber verfügbar war versuchte die deutsche Selbsthilfe EPP das Bundesministerium für Gesundheit von der Notwendigkeit des Medikamentes zu überzeugen.Das Bundesministerium für Gesundheit überzeugte in mehreren Gesprächen die Vertreter der Krankenkassen um eine Übernahme der Kosten

Google translate

Since there were hardly any treatment options for EPP patients and the German health insurance companies did not want to take over the costs, but the drug Scenesse was available, the German self-help EPP tried to convince the Federal Ministry of Health of the necessity of the drug.The Federal Ministry of Health convinced the Federal Ministry of Health in several talks Representatives of the health insurance companies to take over the costs

http://www.epp-deutschland.de/mediapool/21...Laumann_EPP.pdf

https://www.change.org/p/licht-für-alle-the...chen/u/19543457

http://www.change.org/p/licht-f%C3%BCr-all...chen/u/19557305

http://www.epp-deutschland.de/mediapool/21..._vom_6.6.17.pdf
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odi01
Posted on: Sep 24 2017, 08:04 PM


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Ja,ich habe persönlich an dem Jahrestreffen teilgenommen,es gab eine 1,5 Stunden dauernde Fragestunde an dem 3 Ärzte (Düsseldorf, Berlin,Münster) und die 2 Vertreter von Clinuvel teilnahmen,da es ja ein Patiententreffen war wurden zum größten Teil auch die Fragen der Patienten und der Krankheit behandelt :
- bürokratischer Aufwand bei der Vergabe von Scenesse
-zu wenig qualifiziertes Personal
- kleinere Kliniken meiden den grossen bürokratischen Aufwand
-ob deutsche Patienten auch in Niederlanden behandelt werden könnten(schnellere und einfache Vergabe von Scenesse )
- über neue Länder gab es keine Fragen, da nur deutsche Patienten anwesend waren aber die positiven europäische Patientendaten werden für einere schnellere Zulassung in der USA benutzt und der FDA vorgelegt
-es wurden keine Zeiten für die 30 neuen Verteilungszentren in Deutschland genannt,nur das Clinuvel in Verhandlungen mit diesen steht
-die vorhandenen Verteilungszentren versuchen mehr neue Patienten aufzunehmen und mit dem Implantat zuversorgen, der Arzt aus Düsseldorf sagte er könnte mindestens 90 Patienten im nächsten Jahr behandeln (30 Patienten 2017),da neue Personalstellen (Ärzte Krankenschwestern) geschaffen werden
- grosse Unterstützung der deutschen Regierungsvertreter(positiven Einfluss auf die deutschen Krankenkassen ) für eine schnellere Verteilung und Behandlung mit Scenesse
-mit Scenesse behandelte Patienten führen komplett anderes wunderbares Leben ,ein Patient bekommt seit 3 Jahren 6 Implantate pro Jahr

Es war eine informative und interessante Veranstaltungen, die mich weiter gestärkt hat in Clinuvel zu investieren


Google translate

Yes, I personally participated in the annual meeting, there was a 1.5 hour lasting session at the 3 doctors (Düsseldorf, Berlin, Münster) and the 2 representatives of Clinuvel Questions of patients and the disease treated:
- bureaucratic expenditure on the award of Scenesse
- insufficiently qualified staff
- smaller clinics avoid the big bureaucracy
- German patients could also be treated in the Netherlands (quicker and easier allocation of Scenesse)
- there were no questions about new countries as only German patients were present, but the positive European patient data are used for a faster approval in the USA and submitted to the FDA
-es were not mentioned times for the 30 new distribution centers in Germany, only the Clinuvel in negotiations with these stands
- the existing distribution centers are attempting to accommodate more new patients and provide them with the implant, the doctor from Düsseldorf said he could treat at least 90 patients in the next year (30 patients 2017), as new staff positions (doctors' nurses) are created
- great support from the German government representatives (positive influence on the German health insurance funds) for a faster distribution and treatment with Scenesse
- Patients treated with Scenesse perform completely different wonderful lives, a patient has been receiving 6 implants a year for 3 years

It was an informative and interesting event that has further strengthened my investment in Clinuvel
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odi01
Posted on: Sep 24 2017, 04:30 AM


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Posts: 476

Current
Year 2017 in the DJH Berlin Ostkreuz
23.09.2017 - 24.09.2017
Daily guests are welcome!
We look forward to the support of all invited guests!
There, on Saturday afternoon, we will be holding an expert round about the treatment "with the doctors and the patients treated, we have invited the politicians of the BMG!

http://www.epp-deutschland.de/index.html

I participated in the Epp-patient meeting in Berlin today.
There were about 80 people present. There was an interesting discussion round at the doctors from the Universitätskliniken Berlin, Düsseldorf, Münster as well as Dr.Elisabeth Minder and 2 employees of Clinuvel Pharmaceuticals participated.
Here is some information
- most patients get 4 implants this should not be sufficient to 6 implants a year, in all treatment centers
- Dr. Minder said in Switzerland 4.4 implants per person per year
-no capacity in German hospitals, bureaucracy is very big problem
-Clinuvel is looking for 30 new treatment centers in Germany
-Implants to September 2017:
-Niederland 104/104
-Italy 60/80
- Germany 60/400
-Oustria 3/40
-Switzerland 35/40 10 patients from Germany, 1 patient from Luxembourg, 4 patients from USA

-Berlin 2018 at least 30 patients could be treated
- Chemnitz 2018 at least 17 patients could be treated
-Münster 2018 at least 7 patients could be treated
-dusseldorf 2018 at least 90 patients could be treated, university hospital gets an additional doctor only for Scenesse
-Schweiz 2018 at least 35 patients could be treated, additionally patients from Germany, USA, Luxembourg, Belgium

Could talk to Scenessa treated patients, with the implant they can lead a new life and the implant has no side effects! !!

Greetings from Berlin
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odi01
Posted on: Sep 20 2017, 04:24 PM


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http://www.epp-deutschland.de/mediapool/21...rief_fertig.pdf

Readers letter from the board's viewpoint on the article "Nina's Way into Light"
From the perspective of the board of "Selbsthilfe EPP e.V." the article vividly illustrated what it was
for a person means to suffer from the rare genetic disease EPP: years of searching for
Diagnosis, limitations in many areas of life and activities in the light. And always
again tremendous pain after exposure to visible light. This means an unspeakable one
Reduction of the quality of life. Also, it was well represented what hopes with the
February 2016 in the German trade drug. Also the problems,
be treated with this medication. Only in 3 German centers is treated. to
To travel to Dusseldorf, Berlin or Chemnitz means many people
Ways and a lot of time and use of personal finances - if at all a date to get
is. There is hardly any other treatment provided with such hurdles. Also the situation
the hugely stringent requirements imposed by the European Medicines Agency (EMA)
have been restored, which on the one hand the treatment for the doctors and the patients very much
and is not meaningful.
We can not comprehend the statement that the drug is very expensive. Why this
Remark - to make the patient a guilty conscience, that they are the health insurance so
cost a lot? Or the need for an expensive, innovative drug
to question? When we talk about costs, all costs must be put on the table -
namely the costs incurred in patients without medication, For example, therapies for depression,
Loss of work and long-term damage caused by phototoxic effects. One should not disregard
let the number of patients is very small and through it the health care system
comparatively low load.
The board of self - help has tried for years, both in European - in networking with
European patient organizations - as well as in the German health care system
inadequate care of all patients with EPP and provide solutions for a
localized and accessible to all patients, or the permanent treatment
to secure.
Since STERN as a magazine, which appears supregional, by many people at home and abroad
, we hope that the article will also discuss the discussion in bodies of health care
will nourish to improve conditions of treatment and treatment in the long term
"Normal" to see, as with any other disease too!
in. of the Executive Board Elke Hauke ​​/ 1st Chairman of the self-help EPP e.V.
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odi01
Posted on: Sep 15 2017, 05:20 PM


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http://www.epp-deutschland.de/mediapool/21..._Dambrowski.pdf


47 years old patient
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odi01
Posted on: Sep 13 2017, 11:51 PM


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https://www.boerse-stuttgart.de/de/CLINUVEL...ie-AU000000CUV3


????
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odi01
Posted on: Sep 13 2017, 11:42 PM


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http://www.boerse-frankfurt.de/aktie/Clinu...ceuticals-Aktie
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odi01
Posted on: Sep 12 2017, 05:06 PM


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For a few months, she has been testing the only drug available to EPP patients. It is called Scenesse and is put under the skin every two months as chopsticks. The implant pours out the active ingredient afamelanotide. This is to stimulate the melanin production of the body, Svenjas skin is therefore to be browner and more resistant to sunlight. The drug can not cure the disease, but "perhaps it will ease the short distances," Svenja hopes. Until now, she can handle it well.

400 people in Germany have an estimated EPP. As with other rare diseases, it is difficult to find enough patients for trials. However, studies are important to test whether a new drug is effective and safe. Under strict conditions, the European Medicines Agency has nevertheless authorized the drug Scenesse three years ago. It may only be administered to specially trained hospitals, for example in Düsseldorf. It is still very complicated to apply. Only a few health insurance funds pay for the therapy.

Svenja will always suffer from her illness and prefer to walk over the campus in winter.
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odi01
Posted on: Sep 12 2017, 05:00 PM


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http://www.pflichtlektuere.com/17/08/2017/...rutenlauf-wird/
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odi01
Posted on: Sep 12 2017, 04:59 PM


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Posts: 476

http://grundkurs-online.de/lichtkrankheit-epp/
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odi01
Posted on: Aug 30 2017, 05:58 PM


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http://m.asx.com.au/m/announcements.xhtml?issuerCode=CUV
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odi01
Posted on: Aug 27 2017, 01:13 AM


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CUTANEA TARDA

http://clinuvel.com/science-of-skin/skin-c...tanea-tarda-pct
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odi01
Posted on: Aug 13 2017, 04:00 PM


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http://www.porphyria-australia.org/latest-news.html
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odi01
Posted on: Aug 11 2017, 02:30 PM


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Lagoda Investment Management LP 5.26M 11.01% 535.44K 8.02% 08/7/17

Major Hollders Institutional

http://www.barrons.com/quote/stock/us/ootc/clvly
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odi01
Posted on: Aug 10 2017, 11:40 PM


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Posts: 476

Information on Mr Dax alias Dirk Müller🙄🙄 for our Australian friends



Dirk Müller is a financial expert, multi-mirror best-seller author, lecturer, founder of Cashkurs.com - and is regarded as an "interpreter between the financial markets and people outside the stock market". His way on the stock exchange began in 1992, today he is one of the best-known faces of the stock exchange. He is also called Mr. DAX by many media.

http://www.finanzen.net/themen/dirk-mueller
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odi01
Posted on: Aug 7 2017, 05:09 AM


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Posts: 476

The molecular biologist also wanted to get to the bottom of her job and decided to investigate the metabolic defect. She can do this for years at the Triem Hospital in Zurich. In the meantime she developed a drug for which she now fights passionately, so that it can be made accessible to all concerned, of which there are about 7000 in Germany. It causes them to be protected at least a few hours a day in the sun. Dr. Barman-Aksözen takes the preparation itself and has been experiencing a glimpse of light after the other. So she recently went on holiday with her husband in California. "It was such an incredibly beautiful feeling, undeterred to enjoy the grandiose nature without suffering pain," she enthuses, looking forward to the summer. A first step out of the shadow.

http://www.sachsen-sonntag.de/blog/die-sch...e-erbkrankheit/
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odi01
Posted on: Aug 7 2017, 04:52 AM


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Dresden - Your greatest enemy is the sun. For Astrid Schurig (46) the rays can cause pain on the skin and under the skin caused by the genetically induced light disease EPP.

That is why the woman from Dresden, who was born on the shadows side of life, has set herself up without summer holidays and sunbathing.

Even before Astrid Schurig starts the day with her yoga exercises in the morning, she makes the test. She sits down on her little balcony and leaves the sun in her heart and on her skin.

After only a few seconds, she knows whether she can stay home safely or can only go outside in a well-protected way.

Meanwhile, she has accumulated enough experience. Painful especially. For about 40 years, parents and doctors did not know what was going on with her.
Especially every summer holiday, whether by the sea or in the mountains, became a pain. "For a long time, I sat up in the sun, felt my skin as if I were holding fire or attacking it with pinsticks.

Then, hands, feet and face swelled, creating a sort of hot chills, "the sufferer describes.

The parents were initially worried. Later, after doctors could not find anything, they too took it. Astrid herself followed her instinct and tried to avoid the sun.

"Still, I was not a game spoiler. I'd rather bear the pain to be able to play outside, "the shadow woman thinks back.

Later, as a double mother, she had to justify herself before her own children. "In a vacation in Mallorca, I was very extreme. I felt so bad that I had to spend a week in the darkened hotel room. "
In the summer of 2011 she experienced the hell on earth on a campsite. "My face swelled so that the skin cracked on the nose," recalls Astrid.

This was the definitive trigger, no longer to submit to fate. "I also suffered psychologically. For I had, of course, a bad feeling of thoroughly spoiling the holiday. "

She researched on the Internet, read similar medical histories, compared symptoms.

Finally, she encountered the Erythropoietic Proptoporphyria (EPP), also called "Schattenspringer disease", because the person concerned jump from shadow to shadow, so as to escape the sun rays.

After the rare hereditary disease was proved by the trained nursery, she finally had certainty. All the talk of solar allergies, sensitivities, or even of an ill-formed disease suddenly dissolved in air.
The diagnosis now uses Astrid as an opportunity. "I love long beach walks on the Baltic Sea," enthused the Saxon.

"But I consciously forgo a holiday in the summer and so soft on the cloudy autumn."

EPP patients, of which there are an estimated 400 in Germany, have no problem with UV rays and no increased risk of skin cancer. For this, their skin reacts to the visible colored parts of the sunlight, against which no cream helps.

When others complain about bad weather, the hour beats by Astrid Schurig. Then she goes out without any effort. For, in fact, the natural friend, who lives from a small incapacity for work, has no stools at all.

When the sun comes out on the road, she always has a specially prepared trekking umbrella in the emergency luggage, the outside is covered with a silver reflective film and inside is black.

The sun likes Astrid anyway. But only on their large-scale Yogabilders hanging in their apartment
A drug can help the person concerned

The molecular biologist and EPP-affected Dr. Jasmin Barman-Aksözen (39) also wanted to get to the bottom of the disease professionally and decided to investigate the metabolic defect.

She can do this for years at the Triem Hospital in Zurich. Meanwhile, she developed a drug for which she now fights passionately, so that it can be made accessible to all those who suffer from rare hereditary disease.

It means that you can stay protected in the sun for at least a few hours a day, without damaging it. The committed scientist takes the preparation "Scenesse" herself and has been experiencing a glimpse of light after the other.

One of the most beautiful experiences ever since: a dream holiday in sunny California. "It was such an amazing feeling to enjoy the grandiose nature without suffering pain," she enthuses.

A first step out of the shadow and hope for many sufferers.

https://www.tag24.de/nachrichten/dresden-as...er-feind-307384
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odi01
Posted on: Jul 29 2017, 02:21 PM


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https://hotcopper.com.au/threads/ann-clinuv...10#.WXwNhsZCTMI
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odi01
Posted on: Jul 28 2017, 02:18 AM


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https://ih.advfn.com/stock-market/USOTC/cli...-pc-CLVLY/chart
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odi01
Posted on: Jul 28 2017, 12:51 AM


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http://www.boerse-frankfurt.de/aktie/Clinu...ceuticals-Aktie
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odi01
Posted on: Jul 21 2017, 12:57 PM


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The barmer makes it possible:
As we have learned from our member Simone from Mönchengladbach and Peter from Bielefeld, they were allowed to travel to Zurich for treatment, because their health insurance companies - the Barmer and the Iduna - signaled the costs for treatment in Switzerland! After over forty years of life with enormous limitations, Simone and Peter are looking forward to a new life

Two large German health insurance companies (Barmer Krankenkassen, and Signal Iduna) take over the costs for scenesse

http://www.epp-deutschland.de/index.html
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odi01
Posted on: Jul 21 2017, 12:51 PM


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http://www.porphyria.ch/de_wichtige_infos.html

July 19, 2017
Opinion on SGP concerning over-the-counter melanotan I and II products

Again and again we are contacted by EPP patients and / or providers who use melanotan I and melanotan II, products which are similar to Scenesse. We strongly advise against using such products:

The application is not secure and the distribution and application are illegal and negligent. It is punishable with the import of melanotan and one can be accused by the Swiss authorities, in particular the customs and Swissmedic, because of the import.
There are in the medical literature a series of case descriptions with severe side effects of melanotan, including melanomas (black skin cancer) and rhabdomyolysis (dissolution of the muscles). Whether such side effects come from the substance itself or from impurities in it is unknown.
The use of melanotan products excludes treatment with Scenes! If there are side effects with users of both, you can not distinguish whether these come from the illegal products or from Scenesse, which can endanger the admission of Scenesse.
Scenesse, on the other hand, has been controlled in more than 500 EPP patients for over 10 years, and has been found to be safe. The production is subject to strict quality controls and all side effects are carefully registered and clarified. These measures naturally generate costs but are necessary to develop safe and effective medicines.
The Executive Board of the Swiss Society for Porphyria (SGP) is happy to answer any questions.
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odi01
Posted on: Jul 21 2017, 05:26 AM


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The motto of this year's rare diseases is clear: "Research helps healing". And the overall objective of NAMSE, the National Action Plan, is to improve the health situation of those affected in Germany. And for a few rare diseases, there are already targeted treatment options available. However, even in the few cases where a drug has already been developed and approved, the struggle of many patients continues their treatment.

To this end, State Secretary Karl-Josef Laumann, the patient representative of the Federal Government, states:

"An example here is Erythropoietic Protoporphyrie (EPP), a rare metabolic disease, which leads to a strong light sensitivity of the skin combined with severe pain. So far, the affected parties have been able to avoid sun and other bright light sources as consistently as possible in order to avoid pain.

For these patients, there has recently been an approved drug that reduces the skin's sensitivity to such an extent that patients can live a more normal life. Nevertheless, the hurdles for the vast majority of patients are so great that they simply do not get the only approved drug.

As a patient representative, I turned to the coffers, which told me succinctly that only the doctors decide whether the drug is prescribed or not and the funds are not allowed to pay a cost. At the same time, however, I am refused by coffers, although the medication is approved and in the case of rare diseases the supplementary use is generally considered to be valid.

The doctors, on the other hand, demand from the coffers a declaration of costs beforehand, so that they do not stay seized.

With this devil circle the patient in Germany is often denied access to this drug, although everything is clearly and clearly regulated. What makes me so angry is that people still have to fight for the treatment and no participant in the health system is ready to jump over its shadows. Here, all parties are required to find solutions quickly. "


https://www.patientenbeauftragte.de/patient...t-sonntagsreden
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odi01
Posted on: Jul 16 2017, 09:25 PM


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We may be nearing a new era in the treatment of porphyria. The targeted manipulation of the heme synthesis by a therapy with si-RNA could supplement the current therapy of acute hepatic porphyria with hemarginate, whose broad use must be critically questioned, or even replace it. The new data from the first clinical trials presented at a San Diego Congress in December 2016 show an impressive efficacy of si-RNA in acute hepatic porphyria. If these results further confirm, we would be faced with a small revolution in the treatment of these forms of porphyria.

We will also present new developments and data from the 2017 World Porphyry Congress in Bordeaux and will also address the pleasing approval of afamelanotide for the alleviation of light sensitivity in protoporphyrie (EPP). Professor E. Minder, who was involved in the development and licensing, will report on this and further aspects.


http://berliner-leberring.de/termine-aktuelles/
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odi01
Posted on: Jul 11 2017, 03:21 PM


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http://www.pharmtech.com/30-year-history-p...-drug-release-0
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odi01
Posted on: Jul 6 2017, 01:09 PM


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https://link.springer.com/article/10.1007%2...0262-016-0501-5

In 2014, afamelanotide was approved by the European Medicines Agency for the prevention of phototoxicity in adult patients with EPP. No late effects were reported to volunteers 25 years after the first exposure or after a continuous long-term application of up to 8 years in EPP patients, and an immunogenic potential was excluded. In general, the side effects were benign in all studies.
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odi01
Posted on: Jul 5 2017, 05:02 PM


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The manipulation could change the pr department of clinuvel, please wake up
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odi01
Posted on: Jun 28 2017, 01:02 PM


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https://www.statnews.com/2017/06/27/innate-chris-collins/
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odi01
Posted on: Jun 26 2017, 03:13 AM


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https://www.change.org/p/licht-f%c3%bcr-all...TsrM1%2bKBR6cwh


JUNE 24, 2017 - Yannik Hecht started studying in Münster in autumn. Now in the summer he would have great problems, because as a person affected by the rare light disease EPP (erythropoietic protoporphyria) direct sunlight causes him burns and massive pain in the skin after only half a minute. Yannik got lucky and a treatment place in Berlin at the Charité. Under therapy with "Afamelanotid" he can lead a largely undistorted student life, like everyone else in Münster cycle to the university and enjoy the "nice weather" in the open: "I can be hours outside".

The well-known expert for rare gene defects, Prof. Thorsten Marquardt, would like to treat Yannik and other patients from NRW at the University Hospital of Münster. The preparations for this have been completed and the employees of the department have been trained. According to Marquardt, the disproportionate number of additional examinations required by the European Medicines Agency (EMA) and the German Federal Institute for Drugs and Medical Devices (BfArM), however, make the treatment so complex that the clinic can not carry out the therapy. The many extra data collected, which still need to be validated even though the drug is tested and approved at EU level, makes the treatment unnecessarily more expensive - an additional point of friction with the health insurance companies.

Mr Gröhe, how is it that a German authority places conditions that make the treatment for such a restrictive rare disease as EPP in Germany impossible? Just 20 of the 400 patients are also treated three years after admission. And this, although the great suffering of the patients and the enormous benefits they have gained from the therapy, have been the main arguments for admission in the EU!

An affected person, who must bear the consequences and is waiting for the treatment, is Mirko * from Ulm. Last year he became 18 and would be entitled to the therapy. But this summer, too, he spends his day in the darkened house instead of having fun with his friends in the pool. The many missing days due to EPP symptoms have given him back school. At an age when the others are entering a life of their own, they are a source of anxiety about the future. His everyday life continues to consist of unimaginable pain after a short time in the open air, constant light withdrawal and social isolation. His mother fights for a treatment place, but Mirko desperate slowly at the situation.

Mr. Gröhe, we do not mean to fight such access barriers takes depression and suicide thoughts with the concerned ones approvingly. They have been informed about the situation for months. The summer is now DA. We believe it is NOW a round table with all parties involved! What do we have to do to persuade you to convoke him?


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odi01
Posted on: Jun 24 2017, 05:11 AM


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SESSION 4 : ERYTHROPOIETIC PORPHYRIAS
12h00 – 12h30 PL9 : Janneke LANGENDONK (Netherlands) : Afamelanotide (Scenesse, CLINUVEL) for the treatment of protoporphyria-induced phototoxicity, where are we ?

https://icpp2017.org/program/
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odi01
Posted on: Jun 24 2017, 05:03 AM


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https://icpp2017.org/sponsors/
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odi01
Posted on: Jun 24 2017, 02:36 AM


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http://www.srf.ch/news/panorama/leben-im-schatten
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odi01
Posted on: Jun 23 2017, 04:54 PM


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The most important from this time contribution, symptoms and therapy and treatment are described. Patients can stay several hours without discomfort in the sun, and the European regulatory authority is to blame for the delay too many bureaucratic requirements, drug Scenesse is fantastic
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odi01
Posted on: Jun 23 2017, 03:22 PM


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https://www.zdf.de/verbraucher/volle-kanne/...hmerzt-100.html

One of the largest German TV stations
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odi01
Posted on: Jun 23 2017, 12:14 AM


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https://www.bloomberg.com/news/articles/201...options-explode

https://www.bloomberg.com/news/articles/201...seems-to-lessen
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odi01
Posted on: Jun 23 2017, 12:11 AM


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https://seekingalpha.com/article/4082986-bi...ten-even-better
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odi01
Posted on: Jun 20 2017, 07:31 PM


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https://www.srf.ch/sendungen/puls/krank-durch-licht
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odi01
Posted on: Jun 20 2017, 06:54 PM


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Elke Hauke ​​/ 1st Chairperson Self-Help EPP e. V. vorstand@epp-deutschland.de
Dear Mrs. Wittchen,
Dear Mr Laumann,
Dear Mr. Kronauer,
My dear Herr Gröhe
Shortly before Pentecost I will write you again and refer to your statement,
Mr Laumann, at the end of our conversation on 14 February in your office: "We should
But to clear Easter! ".
Already in your press release on the "Day of Rare Diseases" you had, sir
Laumann, fortunately, that according to the GKV-Spitzenverband the demand
Of the clinics after a cost declaration of the corresponding health insurance
Are permitted.
Our attorney could reach before Easter - by writing the KVs - that no
Treatment center. Still, many of us are still waiting
Members and also patients to a treatment - other patients are, for example, beautiful
Treated with the 2nd implant and experience a life like they could never have ever lived.
I come again to our demand of January, during the demonstration on 22.1.17
In writing, back:
We demand a "round table" of all institutions involved: self-help EPP, manufacturer,
BfArM, GKV, the current treatment centers, BMG, and BAG-Selbsthilfe / Düsseldorf
To clarify the following:
• Near - to - the - minute treatment of all adult people with EPP -
Implementation of the right to treatment! There are 3 treatment centers in all
Insufficient human resources to treat the patients. There are
Long waitlists. Again and again financial hurdles seem to get in the way
In addition to the centers in UKDüsseldorf, Charite and Klinikum Chemnitz -UK
Münster does not deal, for example, ZT. - treatment options in the north and
In the south as well as in the middle of the republic.
Not a few patients take long distances - Across the Republic -
To be treated, since there is no way to do so near the place of residence. The
Means a lot of time and expenses for trips and hotel overnight. This is
Not for everyone! Professional activity, child care and financial
Worries do not allow everyone!
There is a right to treatment! If it is not "abandoned aid"
If patients do not have access to treatment ???
• Reliable care for all patients! We were talking about long-term care
at. How should it be guaranteed, if the start already so in the "children's shoes"
Get stuck?
Care for all patients: where is the principle of equal treatment? A few
Patients - first class patients - are treated, T. already with 2. and 3.
Implant - patients of the 2nd class wait without perspective?
Equal treatment within the EU: how can it be that in the neighboring country
Netherlands all patients can be treated ???
Reliable supply means for us also a sufficient number of implants and
Good results in the register study. There are many questions and questions
Uncertainties, both from the patient's point of view and from the point of view of the doctors - just like us
Increasingly in exchange with the centers.
• Thematization of the need for childhood studies. We have this to this day
No information at all. There are more and more parents of children
New audiences with us and hope, hope, hope .... Children suffer, experience social
Exclusion, school attendance / school graduation is at risk, parents and children
Siblings are helpless and suffer with.
• Recognition of erythropoietic protoporphyria as a serious one
Disease with severe neuropathic pain. We had at and after the
Conversation on 14.2. And after contacts with Mr. Gröhe about the university-
Clinic Düsseldorf and a reply letter from him already had the impression that
To move there. But the deeds are missing. "How much water does that have?
Rhine down? "- so we say here in the Rhineland!
We therefore ask you to invite all participants to the "round table" immediately!
Overath, 2 June 2017
C / o: Mrs Schnieders / BMG, Mr Danner / B-AG Düsseldorf, Arndt Wienand,
Lawyer Prof. Dr. A. Ehlers, Dr. Neumann / UKDüsseldorf, Prof. Dr. Höffken / UKDüsseldorf, Dr. Weller, Dr.
Maurer / Charite` Berlin, Dr. Stölzel / Clinic of Chemnitz

http://www.epp-deutschland.de/mediapool/21..._Tisch_Juni.pdf
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odi01
Posted on: Jun 20 2017, 06:49 PM


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http://www.epp-deutschland.de/mediapool/21..._vom_6.6.17.pdf

Dear Ms Hauke,
Dear Mrs Barman-Aksözen,
In the course of our very constructive discussion,
And asked for their assessment of the current situation.
In the answers some problems with the near-term treatment as many as possible
Patients. These are, on the one hand, based on unresolved issues of cost
On the other hand, the high bureaucratic and technical complexity due to the
Requirement.
Overall, however, all centers are very motivated and optimistic
Limited treatment capacities, which are based on the extensive accompanying studies.
We had then contacted the manufacturer,
Centers. The manufacturer has assured us that it is currently working intensively on
To find new treatment centers and to train them, so that the treatment as much as possible
Can be expanded rapidly.
Dear Ms Hauke, Madam Barman-Aksözen, I have a great understanding
That the treatment options should be available to all patients as soon as
Should be. I therefore offered to the manufacturer that he would always be
, There should be difficulties in acquiring new centers.
At the same time, however, I was also told that it was rather counterproductive, too high
Pressure - also from the patient organizations - to potential centers
There is a feeling that they are withdrawing.
I assure you that I will accompany the further developments closely and with all parties involved
Stay in Touch. As soon as I have new information, I will be
men.
With kind regards
Karl-Josef Laumann
Secretary of State
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odi01
Posted on: Jun 20 2017, 04:15 PM


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https://www.sciencenews.org/article/new-kin...nst-skin-cancer
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odi01
Posted on: Jun 19 2017, 02:08 PM


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http://www.leberhilfe.org/2-porphyrie-symp...orankuendigung/

https://icpp2017.org/registration-patient-day/

https://www.srf.ch/programm/tv/sendung/1875...7?ns_source=web
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odi01
Posted on: Jun 18 2017, 01:31 AM


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http://www.porphyriafoundation.com/content...epp-publication
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odi01
Posted on: Jun 17 2017, 11:26 PM


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http://www.businessinsider.de/forscher-kre...unt-2017-6?IR=T
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odi01
Posted on: Jun 14 2017, 06:07 PM


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https://www.change.org/p/ein-leben-ohne-son...O0qyjPTiwgAl%2b

Do not miss! Monday, 19 June, 21:05, SRF1 - Pulse Health magazine - Ill by light
Swiss Society for Porphyria - www.porphyria.ch
13 JUNE 2017 - The TV health magazine Pulse has reworked the excellent reportage of 36.9 of the Télévision de la Suisse Romande and translated it into German and turned into the centerpiece of the next show, which is presented by Andrea Ryter (EPP patient), Rocco Falchetto (EPP -Patient and President of the Swiss Society of Porphyria) and Matthias Schenker (representative of the CSS health insurance) in the study talk. Do not miss this exciting show! Monday, June 19 at 9:05 pm on SRF1
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odi01
Posted on: Jun 14 2017, 05:32 AM


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http://www.reuters.com/article/us-clinical...N0PB64A20150701

The same Dr. Fisher from a report of 2015
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odi01
Posted on: Jun 13 2017, 08:17 PM


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I think the bureaucracy is the problem
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odi01
Posted on: Jun 13 2017, 06:37 PM


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It has been clarified that the treatment centers no longer require the health insurances to be taken over, but all centers have very limited treatment areas !!!!

http://www.epp-deutschland.de/index.html
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odi01
Posted on: Jun 9 2017, 11:50 PM


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For Jasmine Barman, Sun meant a decade of pain. It has EPP, a sun-harmlessness. The drug approved in Germany helped her enormously. But not all concerned are treated.
A small chip changed Jasmine Barman's life: For four years she can stay outside for a while and go into the sun. Previously, that would have meant extreme pain below the skin's surface. The disease is called erythropoietic protoporphy (EPP).

People who suffer from this disease have a genetic defect that causes a metabolic disorder. Sunlight or strong lighting causes a phototoxic, very painful reaction in EPP patients. Some compare it with the bangs that explode under the skin.

"I can stay outside and the sun is not only painful but also warm."
Jasmin Barman, EPP patient
Five years ago, doctors Jasmine used the medication implant, the small chip, in Switzerland. It strengthens pigment production. The dyes then block the visible light like a filter.

"I was very skeptical at first."
Jasmin Barman, EPP patient about the therapy type
Jasmin Barman is one of approximately 400 people with EPP in Germany. At the moment, however, only ten patients are treated at the university hospital in Düsseldorf. Although the drug has been approved for more than two years in the EU, hospitals are no longer providing treatment.

Jasmine and other concerned people wondered why. They found out that the treatment centers do not know whether the health care costs are being taken over by the health insurance companies.

"Perhaps Mr Laumann has other ideas, we are open to everything"
Jasmin Barman on the meeting with the federal government's representative
Jasmin Barman started an online petition and is now meeting Karl-Josef Laumann, the federal government's representative. With him, she wants to talk about the fact that the treatment centers have to get a solid cost-benefit for the therapy from the health insurance companies

https://www.deutschlandfunknova.de/beitrag/...sonnenschmerzen
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odi01
Posted on: Jun 9 2017, 11:43 PM


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The story of Scenesse:

Scenesse was applied to EPP in Switzerland for the first time in a Phase II study in 2006 14. 2007/8 followed a Phase III study. Between 2008 and 2012, the company provided the drug for Swiss students free of charge. Swiss patients have received more free pictures than any other country. For example, the Italian authorities had to pay for Scenesse since 2009. Because, at this early stage, we were unable to calculate a commercial price because of the lack of regulatory requirements, the current price was based on the pure production costs and, as we have seen above, only 20% of the total commercial costs. 2012 the company told us that she could not take over the financial burden for another free treatment in Switzerland and offered us the medicine at the same price as in Italy, i. To the production costs. Most health insurance companies, apart from one, gave us cost-benefit languages ​​according to KVV Art. 71 and we were able to treat almost all Swiss EPP patients who wanted it15.

The approval in Europe took place at the end of 2014, but the drug was not available at the moment, because the EMA required a PAESS, which was first planned and had to be approved by the EMA. This approval was delayed more than 1.5 years after admission, and only after pressure from the patient organizations, which - after many fruitless attempts to obtain a solution by other means - organized a demonstration in England before the EMA building. As mentioned above, the costs of this PAESS and the additional requirements required by the EMA are included as an expense in the annual treatment costs of Scenesse. It is common practice that the regulatory authorities for such studies demand the involvement of cost-intensive consulting firms, which, according to our research, are often conducted by former EMA employees. It is beyond our knowledge whether this is also true of the PAESS of Scenesse, and whether there is a lack of sensitivity, to identify conflicts of interest for such requirements, what EMA representatives have repeatedly been accused of in a different context in recent years 15.

The Efficacy study required for Scenesse is extremely complex and the data must be collected by the treatment centers in a specially created electronic register, which results in a corresponding remuneration by the manufacturer of Scenesse - all costs that have to be passed on to the annual treatment costs , The scientific value of this study is almost marginal in almost or nonexistent control populations and lack of randomization, especially considering that the efficacy of Scenesse has been demonstrated in controlled and randomized trials17 and a long-term open-label study has also been published 15. We are therefore wondering whether the regulatory requirement for this presumably several EUR 10 million study would be able to withstand an objective cost-benefit analysis. Unfortunately, there is no control body that is responsible for this.

Other regulatory requirements, such as careful documentation of side effects and the development of a dosage for children, are considered important and necessary. But these conditions also lead to an increase in the costs of Scenesse. Moreover, compared to other ultra-rare diseases, the annual treatment costs of Scenes are below average if the above-mentioned inverse curve is applied to annual treatment costs for ultra-rare diseases13. The claim that the company exploits its monopoly position can be disproved by looking at the published annual accounts of the company, since in the last financial year as of June 30, 2016 - almost two years after market approval - a deficit of approx. 49% of sales and continues to show a loss for the end of 201618. The arbitration body of the German health insurance funds has set 85% of the amount applied for, which represents a one-time decision in favor of the pharmaceutical company applying for the Arbitration Board's history and refutes the allegation of the use of the monopolistic position. In addition, the manufacturer of Scenesse is pursuing a unique transparent pricing policy by requiring the same price for the drug world-wide without rebates or any kick-backs19, and as an exception among pharmaceutical companies, it meets E. Gysling's requirement.

https://www.infomed.ch/pk_template.php
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odi01
Posted on: Jun 5 2017, 01:51 AM


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A very good report Alaaf

This is how the treatment goes

Then she must go to the clinic, Maya accompanies her every time. In a corner of the room stands a dark blue couch, Clara lays down and pushes her black shirt up. She has to turn to the wall and can not look out to the window and the green trees. The doctor smears an ointment on her waist to numb the skin. A glibber mass.

So she will not have so much pain later when a cannula pierces her skin. She will feel it anyway. Maya sits on a chair next to her and squeezes her hand. Then the doctor puts a blue, sterile surgical tissue on Clara's right side. He presses a cannula into her hip, Clara twitches briefly, pushes an implant through the plastic tube. It is a spongy something, a few millimeters long.

It will dissolve in the body and gradually release the pigment afamelanotide. That which Clara himself can not form. When it is active, the liver spots and moles are darkened, the skin is irregularly pigmented. "Dirty" as she says. But after that she can go into the sun and gets brown faster than others.

Blue gloves stick a white patch on the wound. Clara must be left for half an hour because of the possible side effects she had never had. There are so far no long-term studies; You do not know yet whether and how the drug changes the body.

A semi-normal life

But finally Clara can lead a normal life, even Maya no longer has to hide in the dark.
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odi01
Posted on: Jun 2 2017, 06:58 PM


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http://www.epp-deutschland.de/index.html

End of May 2017 and still no treatment for all !!!! Only isolated is treated !!!!
Mr. Laumann has proposed a solution for Easter 2017! WHERE IS SHE????????
It has been clarified that the treatment centers no longer require the health insurances to be taken over, but all centers have very limited treatment areas !!!!
Only about 25 to 30 treated in Germany !!!!
Where is the solution ???? We are not ready to wait any longer!
Immediately we expect a "round table"! We recall our commitment from January, the "round table" with all stakeholders: Patient Representation, GKV-Spitzenverband, manufacturer, BmG, senior physicians of the centers, BfArM-Bonn as main carrier of the EMA!
We approached Mr Laumann and asked for these meetings.
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odi01
Posted on: May 31 2017, 04:06 PM


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http://www.barrons.com/quote/stock/us/ootc/clvly

Have some new shareholders been added?
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odi01
Posted on: May 31 2017, 12:24 AM


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http://www.cdt.ch/ticino/cantone/177334/ch...ora-troppo-caro
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odi01
Posted on: May 29 2017, 03:19 PM


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https://www.rtlnieuws.nl/nederland/marly-ka...-de-tuin-zitten

Marly can not resist the sun: "I can not even sit in the garden with my children

The Netherlands currently enjoys plenty of sunshine But Marly van Hooff (31) is close to the curtains at home. She has the rare EPP disease and is sensitized to light. "I can not lie on the beach for five minutes yet."

"My curtains are potty all summer and the light dome over the dining table I have eclipsed with a cloth cloth," says Marly van Hooff from the Brabant Soerendonk. This is not just for keeping the heat out, but the dust must especially ensure that no sunlight comes in.

Hypersensitivity to light
Marly van Hooff has EPP, Erythropoietic Protophorphyry. It means that she is hypersensitive to light. About two hundred people have this disease. People who have EPP have a defect in a gene. Something wrong with the creation of red blood cells. Blue light, outside light and sunlight provide a stinging pain that can last for days.

She compares the pain with a full bucket that flows slowly. "The more sunlight, the faster it goes. If the bucket is empty, it takes three days to fill it again."

15 minutes outside
How fast the bucket flows, depends on many factors. Even from the wind direction. "The wind from the northeast is drier and brighter, making the UV radiation herer. At northeast wind, I can only be out of an hour."

"When I go outside, the pain slowly rises. It starts with my skin tone, after which it starts burning, itching, stinging. My skin may turn red, but it does not work. Then sprinkle my skin off. Now I know the preies how far I can go. "

Always watcher
Marly Nebel especially the things that are very ordinary to others. "Mhjj children to go to the playground for a day to the city to go to the beach."

Nevertheless, Marly does enjoy the summer. "In the summer there is a certain atmosphere, everyone is happy. Last night, I am Freund, who's in the middle of the world, sich zu Tühler Towerouwer, if you do not want to come with me, mommy?" Then I feel your spellreker
Parasol does not help anything
Daylight is always there. Even when it's cloudy and even when it's Raining. On such a shining day as today, even shadow of a parasol does not help. Marly: "Indirect light is also harmful and the rays penetrate the fabric of the umbrella. I only stretch it for some time."

"Every situation I wonder: is this party worth the risk of pain? Last week I hated a baby's baby bug. I knew she was wearing a cover in the garden that I could quickly get in if I did not feel. But a Barbecue auf offene Veld I hit über. "

More über EPP

In the Netherlands, between 200 and 300 people suffer from erythropoietic protophorphic acid (EPP).

There is no treatment for the disease. Well, there's a new medicine: Scenes. This produces Pigment, which protects against the sun. EPP patients can tolerate longer daylight for about seven minutes longer in the sun and three hours.

Scenesse has been available on the Dutch market since June 2016. The Medicine is an implant, slightly larger than a rice grain, and works for two months. Up to four implants are reimbursed per year. The long-term effects of the drug are not known yet.

Source: EPP Association
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odi01
Posted on: May 29 2017, 01:00 PM


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http://t.wn.de/Freizeit/Ratgeber/Gesundhei...uch-ohne-Sommer

Rare disease EPP
Allergy to sun rays: Good mood goes without summer
Yannik Hecht could enjoy sunshine like everyone else, if the European Medicines Agency were not always putting stones into the way of an effective drug manufacturer. The bodies of the "shading prickers" react immediately to burns on the sun's rays. The 20-year-old hopes that this will soon be over. By Stefan Werding
Yannik Hecht can not be spoiled by the warm sunshine. Spring is pouring his nose through the door. It is one of the first warm days of the year. But the economics student from Münster looks out over the bright blue sky and says: "After the winter, such days as today are particularly hard."

The 20-year-old is a so-called "Schattenspringer". His body is allergic to certain sun rays. The pain is colossal. If he has not watched a few minutes and got a load of light, then his skin is irritated, burns and itches, swells also. Suncreams and pain relievers do not help cooling brings anything, touches become intolerable. That is why Yannik Hecht is not enthusiastic about a bright blue sky.

Long trousers, long-sleeved sweaters
In Germany there are around 400 known cases of EPP - the dark figure is about twice as high, because many people do not know why they have complaints. It is the blue portions of the light that they are emitting. Since there are also in lamps, sufferers can even sin in the house.

"From the Schattendasein the patient suddenly becomes everyday life. "

Professor Thorsten Marquardt on an effective drug

For Yannik Hecht's everyday life, this means that it is best to get outdoors only when the sun has completely disappeared. Otherwise, the 20-year-old will go from shadow to shadow, go faster and turn away from the sun as much as possible. He is wearing only long trousers and long-sleeved sweaters. He could also wear special coated sunshades. But they are too stupid.

When he goes to sea with his family on vacation, he only goes to the beach when the sun has disappeared behind the horizon. While the others sunbathe on the way to dinner, he enjoys the empty sea. "There is no annoyance," says Yannik. After all.


The illness was noticeable when Yannik's parents arrived early on the way to the holiday home in Denmark and waited in the sunshine to be admitted. In the night after, the boy, then a year and a half, had yelled and shouted. His skin was swollen. "Panic arose with us," says his mother Antje Voss today.

Means for the symptoms
The diagnosis is difficult, her pediatrician still did the pictures of the swollen skin, only when friends suggested the idea of ​​turning to a university clinic, the first time was the term EPP, the abbreviation for erythropoietic protoporphyria. Yannik was already two years older. The diagnosis was a "fright", after all the parents had already intuitively protected their child from sunlight. Voß says: "Children are often not believed. Doctors diagnose everything from solar energy to mental disorder. "

Thus, Yannik has been regularly sent out to school and kindergarten for sports because teachers and educators have not taken seriously the boy's advice - and his parents. "I've always tried to do as much as I can," says the student. That is why he looked for sports such as horseback riding and table tennis. They can also be operated in the hall.

The Bittere: There is a remedy for the symptoms of the disease. As early as 2014, the European Medicines Agency approved the drug afamelanotide. The Australian company Clinuvel has developed "Scenesse". The agent prevents light from entering the skin. Professor Thorsten Marquardt, specialist for metabolic diseases at the University Hospital of Münster, explains: "The situation for patients is dramatically better. From the Schattendasein, the patient suddenly becomes everyday. "97 per cent of the patients were able to get into the sun for a longer time after treatment - and without complaints.

Displeasure about European medicine agency
Yannik, too, has two unique summers, in which he could move like others. Through a legal trick it was possible to get the medicine transplanted under the skin in Switzerland. "That was incomprehensible," says the mother. In the past two years, her son has matured so much that he has dared to move from Hamburg to Münster and live there alone. "Without this drug he would never have taken this step," she says.

Now the health insurance companies do not want to pay the 25,000 euro expensive treatment. Marquardt wondered at the difficulties. The benefit of the drug was demonstrated in a highly qualified study and published in one of the most recognized medical journals. Nevertheless, the European Medicines Agency (EMA) has imposed so many conditions on the developers of the drug "Scenesse" that global market launch has become impossible.

"I've never seen anything like it before," says Marquardt. Instead, the company has to negotiate with individual clinics about the award of the drug. As a result, if "Scenesse" is permitted in Düsseldorf, it is by no means the case that it can be prescribed in Münster - although the medical use is undisputed. That is why Yannik was now at the Charité in Berlin. There he got the medicine.

EPP
A genetic defect is the cause of EPP. By this, the body of Yannik Hecht and other EPP patients produces too little ferrochelatase. This enzyme is involved in the formation of the red blood dye. If there is a lack of ferrochelatase, protoporphyrin accumulates in the body. This substance has the property of absorbing the energy of visible light and returning it as energy. The fabric is massively damaged. Professor Thorsten Marquardt, Head of the Department of Congenital Metabolic Diseases, who looks after patients like Yannik in the hospital, compares this with "internal burns".

The displeasure about the European Medicines Agency is so great that the patients and their relatives have already demonstrated in several cities to speed up the release of the drug. This has helped little so far. "I can not put into words how unjust this is," says Antje Voß. And in the face of the upcoming summer, Marquardt says, "This can not be the perfect year." Maybe next. And until then, Yannik Hecht is still hiding from the sun. Good mood also goes without summer.
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odi01
Posted on: May 24 2017, 09:38 PM


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https://www.nice.org.uk/guidance/gid-hst100...e-post-referral
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odi01
Posted on: May 22 2017, 03:09 AM


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Börse Online Is one of the largest economy newspaper in Germany

Let's go Clinuvel
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odi01
Posted on: May 22 2017, 03:06 AM


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http://www.boerse-online.de/nachrichten/ak...immt-1002008317

However, not quite. "The small Australian pharmaceutical company Clinuvel Pharmaceuticals has earned more attention," he says. Homm has known the company for more than a decade. It was formerly called Epitan and tried to bring a kind of self-tanner on the market. "The share promoters, above all, had the say," recalls Homm. The financial professionals were involved in the reconstruction ten years ago.
However, not quite. "The small Australian pharmaceutical company Clinuvel Pharmaceuticals has earned more attention," he says. Homm has known the company for more than a decade. It was formerly called Epitan and tried to bring a kind of self-tanner on the market. "The share promoters, above all, had the say," recalls Homm. The financial professionals were involved in the reconstruction ten years ago.
Approval in Europe


In 2016, the company received approval for the Euroraum. In Germany, Clinuvel agreed with the cash registers on a billing mode. Since then, the small team has been trying to market the means. With success. Sales are on the rise, Clinuvel writes black figures. Now, approval is to be granted in the USA during the year. This would more than double the market potential. In addition, there are indications such as the pigment disorder vitiligo, whose market potential would be many times higher.

In this initial situation, the investment banker at Homm comes through. What would be the value if it were in the hands of a large pharmaceutical company? "He asks. "A pharmaceutical company is able to lift the potential quickly thanks to the existing distribution. In Europe alone, operating profits of 60 million euros are possible in the indication EPP and in the USA the same amount - a potential of 120 million euros, even at an exchange value of not even 240 million euros ", Homm predicts.

Surely, pharmaceutical companies, which are valued at 20 times the profit, would pay much more than factor 2.

As with all one-product companies in the pharmaceutical sector, opportunities and risks are close to each other. If problems occur, the share can fall significantly. The value is only suitable for investors who are able to bear this risk.
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odi01
Posted on: May 20 2017, 02:34 AM


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https://www.boersen-zeitung.de/index.php?l=...ail_boerse=FRA#

In Germany more sales than in Australia
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odi01
Posted on: May 20 2017, 12:49 AM


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Your dear supporter- you are so great! There are still far too many patients who are still not treated. This is soooo bad! Knowing that right now the healthy (non-EPPler) people enjoy the light and the sunshine and bloom, while you have to fear every minute out there is really cruel. I myself have experienced the 52 years so and now thanks to the treatment can experience an almost normal everyday life. For the first time in my life, I can go on a helmet with a dog or go cycling or mowing the lawn (not long jeans, long sweaters, long jackets, stockings, closed shoes, gloves, hat and umbrella) ... this is a new life!
Please continue sharing this petition so that all patients can experience it!
I thank you!

https://www.change.org/p/licht-f%C3%BCr-all...nglich-machen/w
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odi01
Posted on: May 12 2017, 03:13 PM


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http://www.epp-deutschland.de/mediapool/21..._VKZSeite11.pdf
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odi01
Posted on: May 12 2017, 03:08 PM


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http://www.epp-deutschland.de/mediapool/21..._Dambrowski.pdf

Since 2014, Dambrowsky has also gone
Six times a year for therapy in Zurich.
"The drug that gives me all there two
Months is called Scenesse. "
It could not heal the disease, but
It gave him more quality of life.
"I used to be only ten minutes in
The sun, today it is two hours
"Thanks to the drug he could
Now cycling with his children.
Walk or walk. "And in the
Year when we were with the family
Vacation in Italy, I have for the first time
In my life in the sea. "
According to Dambrowsky, the sick-
Cash now the treatment. That is
Not always been so, the club has
Hard fought for it. However, in the
Of the Federal Republic of Germany.
But only 40 treatment centers in
Chemnitz, Düsseldorf and Berlin. "Our
Association is committed to ensuring that a Ta-
Each one gets the drug, so
All can lead a normal life. "
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odi01
Posted on: May 12 2017, 02:12 PM


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http://www.military-technologies.net/tag/v...-market-growth/
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odi01
Posted on: May 12 2017, 01:10 PM


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http://covenantcompanion.com/2017/05/11/co...ife-in-shadows/
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odi01
Posted on: May 9 2017, 03:20 PM


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http://www.raps.org/Regulatory-Focus/News/...-CHMP-Meetings/
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odi01
Posted on: May 8 2017, 12:44 AM


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http://www1.wdr.de/mediathek/video/sendung...nkheit-100.html
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odi01
Posted on: May 6 2017, 06:35 AM


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Guest Contribution - A milestone for EPP sufferers

After a price increase, various health insurance funds refused to accept the costs of the only effective drug against EPP. With dramatic consequences for those affected. Switzerland. Society for Porphyria has used itself for a solution - with success. A contribution by SGP President Rocco Falchetto ...
After the long winter months many are longing for sun and warmth. This does not apply to people who suffer from erythropoietic protoporphyria (EPP). Because of this, the sun and other light sources trigger a toxic reaction that causes severe internal burns and massive pain. The disease forces the patients to lead a life in the shadow. A new drug has given hope for a few years: it protects against the toxic reactions and gives patients an almost normal life. Although not yet approved in Switzerland, patients have been treated with the drug for many years. The majority of the health insurance funds assumed the costs on request. The European approval of the drug led to a higher, commercial price in 2016. As a result, some coffers refused to accept the costs. The desperate patients were thrown back into their sorrowful old life.

With united forces for those affected

Due to the dramatic situation, the SGP has decided to go public. We have been strongly supported by various stakeholders, including ProRaris. Thanks to a petition, a broad-based media campaign and an intensive exchange with the health insurance companies, well-known coffers finally reimbursed the costs in March 2017. An amendment to the health insurance regula- tion (KVV Art. 71), which came into effect on 1 March 2017 and is specifically applicable to the treatment of persons with rare diseases, has also contributed to this.

But the joy is clouded. I also went to Zurich at the end of March with mixed feelings for my first treatment, because other patients are still waiting for a cost takeover by a few last health insurance companies. We hope, however, that these insurers will also pay the costs soon.

Unequal treatment remains

We remain vigilant in any case, because the problem of the single-choice decisions is not resolved and a long-term sustained drug supply is not guaranteed. Equal treatment of the persons affected by rare diseases is still not ensured, despite the recent changes in the KVV. At the political level, more must be done to eliminate these system errors completely. So we'll stay!

Dr. Rocco Falchetto, Swiss Society of Porphyria

Current

https://www.proraris.ch/seltenen-krankenhei...offene-305.html

https://www.proraris.ch/maladies-rares/vict...teints-305.html
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odi01
Posted on: Apr 20 2017, 07:18 PM


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https://img3.picload.org/image/rcdpdgri/cli...calslimited.jpg
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odi01
Posted on: Apr 18 2017, 11:15 PM


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From the article. ... With great pleasure, we will inform you that well-known health insurance companies have reimbursed their insured persons for the cost of afamelanotide. "...... In Switzerland, if a health insurance has to pay the costs the other health insurance has to pay, this is law
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odi01
Posted on: Apr 18 2017, 06:00 PM


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With Switzerland, everything is settled, read here

https://www.change.org/p/licht-für-alle-the...chen/u/19800935
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odi01
Posted on: Apr 15 2017, 04:18 PM


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http://www1.wdr.de/mediathek/video/sendung...nkheit-100.html

An epp center is located in the Münster University Hospital, and it is also implanted there
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odi01
Posted on: Apr 15 2017, 12:13 AM


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Cashkurs

CK * Stock analysis Clinuvel Pharmaceuticals: Australian company of the future

Our analyst has once again dug you deep into the world of stocks and has come across an interesting candidate whose business model is to treat rare diseases. Of course, Andreas Meyer has also been tapped this Australian company, which is likely to rarely appear on relevant watchlists, on hard figures and substantial investor potentials.

13.04.2017 Author: Andreas Meyer

Clinuvel Pharmaceuticals (ISIN: AU000000CUV3) is a small Australian company that most likely will not appear in most waking lists. And so it goes to me. A few years ago I was first mentioned to the company as Florian Homm the company from Australia. There was hardly any mention of an idea. Anyone who does not know Florian Homm can see here a video interview, which took some cash with him some time ago, so I would like to skip further comments on the person Homm. Since then, I am on the mailing list of the company and follow the development. To small companies, however, we make a bow here at cash rates, also because of the potential market manipulation. Meanwhile, the Group is growing rapidly.

Clinuvel comes from Australia and is, as the name suggests, active in the health sector. The Group is particularly well-known for the research of solutions against the disease erythropoietic protoporphyria (EPP). This is a so-called "light disease", in which sick people develop pronounced swelling in the sun after a short time and have severe pain. The Australians have developed an implant (with the size of a rice horn) for the patient. The name of this implant is "Scenesse". This creates a natural tan of the skin and thus protects patients from the light sensitivity. In addition, this could also prevent skin cancer or be used in later studies for beauty measures (I think here, for example, sun studies). The latter is, however, only speculation on my part, but if one considers what people of the "beauty" because of everything syringes leave, a reiskorn-large implant could not represent a large hurdle. It is critical that Clinuvel has fixed the prices for treatment according to EU approval at 67,000-88,000 euros. An amount that many health insurance funds are not willing to pay and therefore also beauty fanatics still make a bow. However, as the company grows, the price is also likely to fall, since here, of course, the massive research costs are also included.
U.a. With this product, the Group generated sales of just 12 million AUD (approximately € 9 million) in the past financial year. This is amazing considering the market capitalization, which is over 300 million AUD, and shows that here fantasy, hope and speculation are close together.

It is positive that the Group was able to record gains for the first time at the end of 2016, while the net profit was still at AUD 3 million. Profitability, which shows what the Group could continue to do in the future.

The chart

The often self-fulfilling prophecies of the chart technique, have also seized with this candidate. Over-sold situations with the RSI (under 30) as mid-February or a cutting of the MACD indications in mid-March and even now have shown upwards trends and continue to do so. There would be opportunities.
It looks different in the long term. Over the past five years, sales have grown by over 25% on average. Further growth is expected, although it must be noted that the Group is, of course, still at the beginning. The chart over a period of three years underscores this.

As a growth company, it is not untypical to structure the funding through initial donors. As a result, equity is almost 90%, debt is only 2 million AUD in short-term FK / liabilities, and even free cash flow is impressive at AUD 4 million. At the cash desk, AUD 14 million was thus significantly higher than the Group generated in revenues. This is also a sign of the ability of Australians to act. The stock itself, on the other hand, is currently more than expensive. This shows all the usual valuation figures such as a KBV of 16.4 or a KUV of 28.1. On the positive side, however, the Group was significantly more expensive in the past, especially in the case of the KUV (price-to-sales ratio). Since the share would still have to catch up to the growth in sales and assuming that the sales continue to increase, this should also help the share.

The company owns some biotech funds and the management. This way, partners are found who are convinced by the story itself and can also act as potential new sponsors.

In general, there are some factors that are crucial. You have to be absolutely convinced of the story itself. In Germany, estimates are estimated for 800-1,000 patients. Let's take 900 cases, all of which would be an admission to treatment at an average price of € 75,000, which would be a turnover in Germany of € 60,000 million (AUD 80 million). We know, however, that health insurance companies are often quaking because of the high costs. This is against the fact that we have referred to this example only in Germany, but there are many other people around the world with the disease. Approximately 5,000-10,000 people are estimated. Since this is a hereditary disease, people in the Nordic regions are affected, of course. On the other hand, we are confronted with the fact that here in Germany we have a health care already built on the solidarity principle. All these estimates must be carefully weighed.
https://www.heise.de/tr/artikel/Lichtkrankh...it-3594624.html

The company therefore requires much more research, which, however, can be incredibly exciting because of the interesting subject matter. A detailed study of the annual financial statements is also essential. Further information must then, however, be referred to the sickness itself, the admission standards, etc., especially in the case of health care organizations and health insurance funds.
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odi01
Posted on: Apr 14 2017, 02:12 PM


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http://www.evenement.ch/include/mod.print.php?aid=1704
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