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

Será Porfiria?

by maricruz_pita28 published about 12 hours ago
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Hola, soy de Lima Perú, desde pequeño mi hijo se ha quejado de dolor en distintas partes del cuerpo, sin nada que lo justifique, he acudido a la sa...

My life with Porphyria

by hansjoachimhueter published 2 days ago
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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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