Porphyria Community

Here's a selection of information from patients & professionals to better understand Porphyria.

Here are some of the most frequently asked questions and their answers:

If you are a patient or carer with a question about living with Poprhyia, about treatments, or other relevant information please email your question to webmaster@rareconnect.org and we will put it to the specialists who have agreed to answer your questions from time to time.

More F.A.Q about:

Acute Porphyria

Erythropoietic Protoporphyria (EPP)

Porphyria Cutanea Tarda (PCT)

Congenital Erythropoietic Porphyria (CEP) 

*All the F.A.Q have been written by the European Porphyria Network (EPNET)