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 belowPorphyria Resources
Latest Member Stories
I have an happy life and my EEP is a very light one compared to others.
I am sensitive to sunlight, I learned to avoid sun inside the car, chang...
Partners and Patient Groups
RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.
- British Porphyria Association
- Asociación Española de Porfiria
- Swiss Society for Porphyria
- Asso. Française des Porphyries
- Riksföreningen mot Porfyrisjukdomar
- Porphyria Association Australia
- Canadian Association for Porphyria
- Associação Brasileira de Porfiria-ABRAPO
- Porfiria México
- Vereniging van patiënten mit E.P.P
- Fundacion para las Porfirias en Colombia