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.

Source: Participating patient organizations visible below

Porphyria Resources

More members stories

Latest Member Stories

Same time next year?

by virginia published 9 days ago No comment

This time, last year, I had never heard of Porphyria. Never. Ironically, I work as a special educator with a post grad degree in rehabilitation and...

Over 10 years without symptoms

by goldflowers published 18 days ago One comment

From then on twice a year, in winter towards spring and in fall towards winter, when the sun was shining it was practically the worst thing on Eart...