General News

APF general news

SCENESSE® Released for European Distribution

Clinuvel Pharmaceuticals Limited (ASX: CUV; ADR:CLVLY; XETRA:DAX) announces today that the European Medicines Agency’s (EMA’s) Pharmacovigilance and Risk Committee (PRAC) has agreed to a Post Authorisation Safety Study (PASS) protocol, allowing SCENESSE® (afamelanotide 16mg) to be released for the commercial supply to adult patients diagnosed with erythropoietic protoporphyria (EPP).

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Your APF Membership

We are currently working on the 4th quarter Newsletter, where you can find latest news, updates and stories from the porphyria world. Our members, who made deductible charitable contributions, will receive the fresh issue.

United States House of Representatives passed the 21st Century Cures Act (H.R. 6)

I am very pleased and proud to announce that by a vote of 344-77, the United States House of Representatives passed the 21st Century Cures Act (H.R. 6), which aims to accelerate the discovery, development and delivery of life-saving and life-improving therapies. The bill also would transform the quest for faster cures by modernizing and removing regulatory processes and barriers that often slow the translation of new discoveries into treatments for patients.

Media Attention

We would like to thank all EPP patients and family members who have been able to bring their stories to federal and local TV and print media.

Please contact your local radio stations, TV channels and newspapers if you haven't done it yet and share your story about your type of porphyria! If you need any assistance, supplies or awareness materials give us a call at 713.266.9617.

 

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