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

PORPHYRIA VARIEGATA)+ extras

by porfiriavariegata published 22 days ago 9 comments

First of all, I would like to say that I am an extremely healthy person and I do a lot of sport. I have never drunk alcohol, I have never smoked a ...

Rare Disease Day 2015

by RareConnect team published about 1 month ago No comment

Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the gen...