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.

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More members stories

Latest Member Stories

My life with an undiagnosed erythropoietic protoporphyria

by Flavie published 6 days ago
5 comments

I have an happy life and my EPP is a very light one compared to others.

I am sensitive to sunlight, I learned to avoid sun inside the car, chang...

My life with Porphyria

by hansjoachimhueter published 11 days ago
No comment

I fought against these symptoms the entire year. I did not want to hide in the house and very often went out together with my classmates. Of course...

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