News

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May 04, 2013

APF Members making a difference.

We want to send a big thank you to our longtime APF member and longstanding volunteer, Amy Chapman….

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Apr 26, 2013

Student Alessia Callahan Educates Classmates during National Porphyria Awareness Week

Thank you to all who participated in the National Porphyria Awareness week.

We would like to sincerely thank everyone that was involved in last weeks National Porphyria Awareness activities.

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Apr 24, 2013

FDA opens new line of communication with patients…

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Apr 03, 2013

Important News....

Porphyria Awareness Week!

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Mar 25, 2013

MONICA'S PORPHYRIA AWARENESS WEEK EVENT

We are excited about all of the activities our members are planning for the soon approaching Porphyria Awareness Week, April 14-20 2013. APF member, Monica Fleegel, is hosting a very creative campaign to heighten porphyria awareness and raise funds for the APF to train future experts via the Protect the Future program. The attendees will also be writing letters to the FDA in support of the approval of ne

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Mar 19, 2013

FDA Letters From People with EPP

EPP friends and family members of EPP people please get your pen and paper out and write a letter to the FDA. The reason is that we need to assure them that people with EPP are in grave need of a treatment.

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Mar 03, 2013

PORPHYRIA RESEARCHERS NEED YOUR HELP!!

PORPHYRIA RESEARCHERS NEED YOUR HELP!!

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Feb 26, 2013

Rare Disease Day February 28th 2013

Rare Disease Day

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Jan 21, 2013

Alberta Rare Blood Disorders Education Day

Saturday, March 9th, 2013. 8:00am - 4:30pm Alberta, Canada

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Jan 09, 2013

Statement on Signing the Orphan Drug Act

May 04, 2013

APF Members making a difference.

Apr 26, 2013

Student Alessia Callahan Educates Classmates during National Porphyria Awareness Week

Apr 24, 2013

FDA opens new line of communication with patients…

Apr 03, 2013

Important News....

» More recent news

May 18, 2013

International Meeting of Porphyria Patients

Apr 14, 2013

National Porphyria Awareness Week

Dec 8, 2012

APF Exhibit at the American Society of Hematology. Volunteers needed.

» More upcoming events

Member Stories

Penelope Burris (Acute Intermittent Porphyria (AIP))

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APF In Touch

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» 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...

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Jan 09, 2013

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