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THE FDA APPROVED SCENESSE!

THE FDA APPROVED SCENESSE!
Clinuvel Pharmaceuticals Ltd has announced that Scenesse/Afamelanotide 16mg has been approved in the USA by the Food and Drug Administration for the treatment of Erythropoietic Protoporphyria.
The APF is proud of our EPP community who fought for years for this approval. There are 7000 known rare diseases, 5% of them have an FDA-approved treatment. FINALLY, EPP is one of them! Congratulations on this monumental win.

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Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…