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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.

Sep 14, 2014


Sunday September 28th, 4:30-6:30 pm 

6 Mistflower Lane 

Santa Rosa Beach, Fl. 32459 

My home, All are welcome!!


Sep 11, 2014

Dateline NBC seeks EPP patients

Sep 03, 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 9th from 3 to 6 pm.

Aug 27, 2014

Below you will find a list of current studies with short summaries. Please consider being a part of a study. The research is a key to your cure!


7204: Clinical Diagnosis of Acute Porphyria

Aug 20, 2014


Below you will find a list of current studies with short summaries. Our next E-news will cover the second portion of the ongoing studies.


7201: Longitudinal Study of the Porphyrias          

Aug 13, 2014

The APF will be hosting patient meetings during AASLD (Boston) and ASH (San Francisco) conventions. The Boston patient meeting will take place around November 8; the San Francisco meeting is planned on December 6.

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