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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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Summer protection

by mireillelarbreajouer published 2 months ago

We live in the South West of France and summer is really complicated for us. We discovered the ACTINICA cream but it is not enough, and I am all da...

Not a Vampire

by Magdellena published 3 months ago

I can always tell when Porphyria has been featured in pop culture, a telly show or a book or a movie, because suddenly my friends begin inundating ...