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If you have not seen the APF DVD, Porphyria LIVE , you can order one today and get one free for your ... doctor or additional family members will hear the FACTS about the different types of porphyria and will gain a greater understanding of ...
News - Apr 19 2013 - 3:29pm
... against ultraviolet rays. The protective effect lasts about two months, according to Clinuvel, the drug's Australian manufacturer. ... available for EPP. According to the American Porphyria Foundation, beta-carotene is the most effective therapy ...
News - Sep 6 2011 - 12:53pm
... had just been informed by the FDA that they would meet about the Phase III trials in May, which precluded any trials in 2012. I was in ... namely, the video Mike Kenworthy, Matt Johnson and Porphyria expert, Dr. Robert Desnick, had filmed last year had not been posted ...
News - Mar 29 2012 - 7:57pm
Type of Porphyria: Erythropoietic Protoporphyria (EPP) I am a ... my sun exposure to no more than an hour in full sun and about two hours covered up. I use tons of sunscreen and protective clothing ... of these resources to patients and families dealing with all types porphyria. Please call our office to let us know how we can help you . ...
Member Story - Apr 19 2013 - 2:30pm