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Informative Porphyria Post

Porphyria Post

Now Available on the APF Website - the 4th Quarter Newsletter
The 4th Quarter APF newsletter has been mailed and is hitting doorsteps as we speak. In case you missed the latest copy, you can read it on the APF website.
Holiday Shopping Made Easy!

Our very own APF store is your perfect solution for last minute gifts and stocking stuffers.
The store has items to fit everyone's needs. There, you can find cozy tee-shirts, fun apparel Items - not to mention practical items everyone should have. By shopping at the APF Store, you can spread the holiday spirit, support a great cause and give to those you love.

It’s almost a wrap! Remember, when you finish your holiday shopping at, amazonsmile donates to American Porphyria Foundation at no cost to you!
You can also shop all year round using amazonsmile and the donations will still go to the APF.
It's simple.You shop. Amazon gives.
· Amazon donates 0.5% of the price of your eligible amazonsmile purchases to the APF.
· amazonsmile is the same Amazon you know. Same products, same prices, same service. It's simple and easy!

During this holiday season, we would like to wish all of you good cheer and health. May your holidays be blessed with love and caring. We look forward to a New Year of continued advancements in research, education and patient advocacy.

APF Holiday Office Hours

In honor of the holiday season our office will be closed from Wednesday December 25, 2019 through Wednesday January 1, 2019.
Should you experience a medical emergency and need assistance, please call 911 immediately.

Get Involved

Contact Information
Is your contact information up to date?
If not please give us a call @ 1.866-APF-3635 or Email to
American Porphyria Foundation| 1.866.APF.3635 |

"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…