Welcome - Porphyria Community

What is Porphyria ?

The porphyrias are a group of eight, relatively rare, genetic disorders. In each porphyria a specific enzyme, which is needed to complete each step on the pathway to produce haem, is faulty. With all porphyrias this results in a build-up of porphyrins. They have two possible effects: acute attacks or skin sensitivity in sunlight.

Source: Participating patient organizations visible below

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More members stories

Latest Member Stories

Living with EPP. Experiences and Tactics for Survival.

by outdoorsant published about 1 month ago 4 comments

I'm in my 40's now. EPP has seriously knocked my confidence and affected my life opportunities and choices. At times living with EPP has been nothi...

The start of a new life

by Domylou published about 1 month ago No comment

In 2004, I expected my first child, normal pregnancy but the doctor imposed a strict diet because I was already obese. For nine months I had to be ...