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

Life is a struggle

by TonioGt published 6 months ago
One comment

I was diagnosed after almost 30 years of the first symptoms, which have evolved very slowly - fortunately - thanks to the attention that I have for...

Would it be Porfiria?

by maricruz_pita28 published 6 months ago
One comment

Hi, I am from Lima, Peru, my son has complained about pain in different parts of the body since he was little, without any justification, I’ve come...

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