Monday, October 27, 2014

Exciting News for EPP Treatment

Exciting News for EPP Treatment

Exciting news!!! The EMA has recommended granting a marketing authorization under exceptional circumstances for Scenesse (Afamelanotide) for the treatment of erythropoietic protoporphyria (EPP). Scenesse is the first medicine for patients with this condition. We believe the FDA will approve it soon. Thanks to the Porphyria Research Consortium Experts: Karl Anderson, MD, FACP, Herbert Bonkovsky, MD, Montgomery Bissell, MD, Joseph Bloomer, MD, Robert Desnick, PhD, MD and John Phillips, PhD, and to all the research volunteers. You are all Medical Heroes! Thanks to the APF stuff as well.

"Remember....Research is the key to your cure!"

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Genetic Changes in Porphyria

Each form of  porphyria  results from mutations in one of these genes:  ALAD ,  ALAS2 ,  CPOX ,  FECH ,  HMBS ,  PPOX ,  UROD , or  UROS . ...