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Nov 15, 2014


A Cowboy Love Story    What better story than a cowboy love story? And this love story is the REASON for the Shadow Ride. 


Oct 31, 2014

Dear Friends,

We are happy to announce our new Donations System that helps make it easier for making donations to the APF.  You can now give via text donation.


Text Donations using  your Smart Phone:

Oct 24, 2014

Exciting news!!! The EMA has recommended granting a marketing authorization under exceptional circumstances for Scenesse (Afamelanotide) for the treatment of erythropoietic protoporphyria (EPP). Scenesse is the first medicine for patients with this condition. We believe the FDA will approve it soon.

Oct 08, 2014


As you know, American Association for the Study of Liver Diseases (AASLD) will host their annual meeting in Boston Nov 7-11, 2014 at the Hynes Convention Center. We invite you to participate in a patient education meeting. The meeting will be held at the Carrie Hall at the Brigham and Women's Hospital on November 9 from 3 to 6 pm.


Oct 06, 2014

Researchers are currently accepting participants for a 6-month Natural History Study of Acute Porphyrias


Oct 03, 2014

Exciting New Continuing Medical Education Course CME With Drs Herbert Bonkovsky, Lisa Kehrberg and Brendan McGuire. 

Sep 28, 2014

APF member Sarah Lee and some of our other APF members came up with a great way to help spread Awareness about Porphyria by taking a pie in the face on video and nominating others to do the same and posting it on Facebook, #porphyriapiechallenge.

Sep 23, 2014

Sep 22, 2014

This week we are publishing the article written by our Executive Director Desiree Lyon.

Sep 17, 2014

We invite you to be an important part of a 7201: Longitudinal Study of the Porphyrias. Being a part of the study is an extremely easy process.  All that is needed from you is a little of your blood and answering a questionnaire.  It is easy, but very important for porphyria researchers.

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