News

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Jan 21, 2015

In preparation for National Porphyria Awareness Week, April 11-18, 2015, the APF will send you a packet with brochures, a complimentary DVD and extra materials if you would like to distribute information in your communities.

Jan 07, 2015

Everyone loves a cowboy love story, and you will love this true story about APF member, cowboy Scott MacMeeken and his beautiful bride Michelle.  After they married, Scott saw firsthand how difficult it was for Michelle to live with the severely photosensitive porphyria, Erythropoietic Protoporphyria (EPP).  Like many EPP patients, Michelle suffered from the searing pain and swelling upon venturing into the sunlight.  EPP patients are often seen jumping from shadow to shadow to avoid the painful light. 

Dec 17, 2014

Tara Cantley is one of the most recent patient volunteers to enroll in the Longitudinal Study, Panhematin Study and the Natural History Study of Acute Liver (Hepatic) Porphyria.

Dec 10, 2014

The APF just came back from the 56th ASH Annual Meeting, which was held in San Francisco, CA. More than 20,000 hematologists and health professionals in the field were in attendance. The APF educated physicians, professionals and everyone interested.​

Dec 04, 2014

The American Porphyria Foundation will be hosting the patient educational meeting on December 7, from 4 pm to 6 pm at Hyatt Regency Five Embarcadero Center, Room: Garden A, San Francisco, CA 94111.

Nov 15, 2014

 

A Cowboy Love Story    What better story than a cowboy love story? And this love story is the REASON for the Shadow Ride. 

 

Oct 31, 2014

Dear Friends,

We are happy to announce our new Donations System that helps make it easier for making donations to the APF.  You can now give via text donation.

 

Text Donations using  your Smart Phone:

Oct 24, 2014

Exciting news!!! The EMA has recommended granting a marketing authorization under exceptional circumstances for Scenesse (Afamelanotide) for the treatment of erythropoietic protoporphyria (EPP). Scenesse is the first medicine for patients with this condition. We believe the FDA will approve it soon.

Oct 08, 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 9 from 3 to 6 pm.

 

Oct 06, 2014

Researchers are currently accepting participants for a 6-month Natural History Study of Acute Porphyrias

 

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