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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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Not a Vampire

by Magdellena published about 1 month ago One comment

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 ...

Register for the International Porphyria Patient Day 2015

by Stargazer published about 1 month ago No comment

The attendance is free for both patients as well as professionals, so there are no costs for the Patient Day, we as organizers will cover the expen...