American Porphyria Foundation Purple Light Blog

This blog is dedicated to all the Porphyria patients worldwide. The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org


RECORDATI RARE DISEASES & PATIENT ASSISTANCE HELP
January 22, 2020

RECORDATI RARE DISEASES & PATIENT ASSISTANCE HELP

If you have attacks of Acute Porphyria you may be familiar with the Drug Panhematin.
It is the first Orphan drug & has helped many around the world. 

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Acute Hepatic Porphyria: Understanding Porphyria
January 11, 2020

Acute Hepatic Porphyria: Understanding Porphyria

Porphyria is a family of rare, genetic diseases characterized by potentially life-threatening attacks and, for some patients, chronic debilitating symptoms that negatively impact daily functioning and quality of life. 

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A proposed regulation would add a new layer of scrutiny to disability claims
January 8, 2020

A proposed regulation would add a new layer of scrutiny to disability claims

Some Americans could lose Social Security Disability Insurance benefits under a recent Trump administration proposal -- a change that could affect thousands of people but that has received little attention since it was first floated in November. 

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American Porphyria Announcements
January 8, 2020

American Porphyria Announcements

Are you ready to face new challenges with your Porphyria? Need assistance in learning and understanding what to say to your treating physician. No matter where you live be prepared.

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Clara Hauke Personal Journey with EPP
January 6, 2020

Clara Hauke Personal Journey with EPP

I'm 18 years old and have experienced pain after staying in the sun since I was about 2 years old. When I was 2, I was outside and all of the sudden I started crying. Nobody knew why and my parents asked themselves whether or not I was pretending.

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