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.
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Oct 24, 2014
Oct 08, 2014
As you know, American Association for the Study of Liver Diseases (AASLD) will host their annual meeting in Boston Nov 7-11, 2014 at the Hynes Convention Center. We invite you to participate in a patient education meeting. The meeting will be held at the Carrie Hall at the Brigham and Women's Hospital on November 9 from 3 to 6 pm.
Oct 06, 2014
Researchers are currently accepting participants for a 6-month Natural History Study of Acute Porphyrias
Oct 03, 2014
Exciting New Continuing Medical Education Course CME With Drs Herbert Bonkovsky, Lisa Kehrberg and Brendan McGuire.
Sep 28, 2014
APF member Sarah Lee and some of our other APF members came up with a great way to help spread Awareness about Porphyria by taking a pie in the face on video and nominating others to do the same and posting it on Facebook, #porphyriapiechallenge.
Sep 23, 2014
Sep 22, 2014
This week we are publishing the article written by our Executive Director Desiree Lyon.
Sep 17, 2014
We invite you to be an important part of a 7201: Longitudinal Study of the Porphyrias. Being a part of the study is an extremely easy process. All that is needed from you is a little of your blood and answering a questionnaire. It is easy, but very important for porphyria researchers.
Sep 14, 2014
Sunday September 28th, 4:30-6:30 pm
6 Mistflower Lane
Santa Rosa Beach, Fl. 32459
My home, All are welcome!!
Sep 11, 2014
Dateline NBC seeks EPP patients