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.
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Sep 28, 2014
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.