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Very Important!!! Be A Medical Hero!!!

Research sites are opening for the Givosarin drug to prevent attacks in Miami, Wake Forest , NC, Galveston, TX, New York, Philadelphia, San Francisco, Ann Arbor, MI, Salt Lake City, Little Rock, Boston,
The new drug, Givosarin, is being researched to prevent acute porphyria attacks and hopefully the chronic pain associated with acute porphyria..aip, hcp, vp, Adp.
So far, the results of a trial have been very impressive. We cannot have new treatment without You as a volunteer. Participation and travel is free . 

Call the APF toll free 866-APF-3635.

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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…