Porphyria Awareness Week 2010

National Porphyria Awareness Week will take place from April 17 through April 24, 2010. Raising awareness means reminding more doctors of the diagnosis and its tell-tale signs; educating friends and family members about the symptoms and treatment for different types of porphyria; and raising funds for porphyria research and education.

2010 will be an exciting year for porphyria awareness as the Porphyria Rare Disease Research Consortium begins to build a National Porphyria Registry. We hope all APF members and supporters will find a way to get involved. Read more about National Porphyria Awareness Week or call our office at 866-APF-3635 for more information or to volunteer.

Event News

Feb 01, 2012

National Registry

Jan 24, 2012

HR2674 Bill Almost Defeated!!

Don't Forget to Join the National Porphyria Registry

SSA To Expand Compassionate Allowances List in 2012

» More recent news

Dec 10, 2011

American Society of Hematology

Nov 6, 2011

APF Patient Meeting

Nov 4, 2011

The 62nd Annual Meeting of the American Association for the Study of Liver Diseases

» More upcoming events

Member Stories

Elyse Adam (Erythropoietic Protoporphyria (EPP))

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APF In Touch

Become a member of the APF In Touch Network. Read more...

» Join the APF today...

» EPP research Links lead to 3rd party sites

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...

Porphyria Awareness Week 2010

Member Stories

APF In Touch

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