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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Latest Member Stories

Regione Lazio commissariata, malati rari costretti al pronto soccorso

by TonioGt published 20 minutes ago
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Nel caso delle porfirie acute non c’è dubbio: serve un internista (gastroenterologo, epatologo, ematologo), serve un ambulatorio per evitare che le...

How to treat acute intermittent Porphyria?

by taticomary published 2 months ago
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Since February 18th this year, my daughter has been hospitalized for acute onset of bowel obstruction. Doctors in the emergency room treated her w...

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