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APF Membership

APF Membership

APF Membership: Guess what? It's FREE!
DNA is FREE to all who join the Longitudinal Study!
Doctor packets are FREE!
Patient packets are FREE!
Subscription to our Weekly E-news is FREE!
Consults by experts with your doctor is FREE!
Brochures are FREE!
Hope is FREE!
And so much more!!! 
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Is your membership and contact information up to date? If you have moved, please update us with your current address. Also, be sure to send us your email address so you can receive the weekly Porphyria Post.
Donations and/or special contributions are appreciated:
A Memorial or Remembrance Gift honors a loved one or friend as it provides support for vital porphyria research and educational programs.
Protect the Future Fund: The lack of future porphyria specialist is a crisis. There is no special government funding to train new porphyria specialist, so we must do this ourselves. Without financial support, we run the risk of losing knowledge of the disease, quality testing, diagnosis and treatment.
Research projects
Patient and Physician education
To make a contribution, please use the links provided or call the APF at 1.866.APF.3635 or 713.266.9617!
Link to donate online: 

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


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Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!


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…