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Thank you each and every member of the APF. We could not do it without YOU!

Thank you each and every member of the APF.  
We could not do it without YOU!

Look at all the research projects, advancements toward new medications, and people living long healthier lives.  Thank you for getting the word out to your Doctors, RN's, Family and Friends.

To the hospitals, ED's, Dr. offices with your Patient packets, Doctors receiving the Dr Kits and ER Kits.  We need you to continue speaking up about Porphyria how are you affected daily by it.

Look at all the media attention all around the world- keep speaking up and out loud!

Take a minute and ask yourself where did I get this information from, have I myself read it and educate myself and loved ones to.  I enjoy receiving gifts "golden nuggets" of information from the APF.  

I make sure that I once a year or more, I make sure that my membership is current to continue to receive these gifts & my donations are tax deductible.  So will you help encourage your family, friends by donating your time, efforts, and monetary donations to continue to support the APF.  If you have just 5 minutes a simple phone call will do so much good.  Please call 1-866-APF-3635 and have a wonderful weekend to all.

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

images of a happy weekend


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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…