About this condition
Erythropoietic protoporphyria
This is information, not medical advice. A doctor or genetic counsellor is the right person for decisions.
What this means, in plain words
Erythropoietic protoporphyria is a rare condition linked to the FECH and ALAS2 genes.
No two people with this condition are the same, and not everything on this page will apply to everyone.
You are not alone
Looking up how many people live with this…
People you can contact
Looking for patient groups…
Things you can do this week
Questions to bring to your doctor
- Has a gene change been found, and is it the kind usually seen in erythropoietic protoporphyria?
- Is there a treatment for this condition, or a study we could join?
- Should we see a genetic counsellor about what this means for the rest of the family?
Studies looking for participants
Looking for studies… Search ClinicalTrials.gov yourself ↗
The detailed view: how it works in the body, related diseases and research ideas.