Member Stories

Because Porphyria is so rare, many newly diagnosed patients have never even heard of the condition before, let alone met someone else who suffers from it. We post some of our members' stories on this website to help readers connect a name and a life story with the disease. Read member stories here.

The APF is not responsible for the interpretive translations in other languages.

The information contained on the American Porphyria Foundation (APF) Web site or in the APF newsletter is provided for your general information only.

The APF does not give medical advice or engage in the practice of medicine. The APF under no circumstances recommends particular treatments for specific individuals, and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.

All information and content on this Web site are protected by copyright. All rights are reserved. Users are prohibited from modifying, copying, distributing, transmitting, displaying, publishing, selling, licensing, creating derivative works, or using any information available on or through the site for commercial or public purposes.

The American Porphyria Foundation (APF) Tax Forms 990 are readily available to the public. If you would like a copy, please contact the APF: 4900 Woodway, Suite 780, Houston, TX 77056. Toll free: 1.866.APF.3635. Join the APF—Your donations help support patient and physician education as well as porphyria research. Learn more...

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