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... 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
... This study is conducting research for all types of porphyria. Participation in this project will include: Participating ... medical records. Interview to provide information about your medical history and family history. Completing a ...
News - Aug 20 2014 - 2:49pm
... 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
... your cure! 7204: Clinical Diagnosis of Acute Porphyria We will enroll individuals who are first-degree relatives ... study (study taking place over a long period of time) of about 150 individuals with EPP. Participants enrolled in this study should also ...
News - Sep 8 2014 - 11:08am
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