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


Rare Disease Day 2020 is this Saturday 29 February!
February 28, 2020

Rare Disease Day 2020 is this Saturday 29 February!

Rare Disease Day 2020 is this Saturday 29 February!

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Rare Disease Day
February 24, 2020

Rare Disease Day

NORD a rare disease? Permission to use NORD

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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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