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'm in my 40's now. EPP has seriously knocked my confidence and affected my life opportunities and choices. At times living with EPP has been nothi...
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
- Canadian Porphyria Association