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
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Partners and Patient Groups
RareConnect is a joint venture of EURORDIS and NORD. 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
- Alberta Porphyria Society
- Associação Brasileira de Porfiria-ABRAPO
- Vereniging van patiënten mit E.P.P
- Fundacion para las Porfirias en Colombia