Other Names for this Disease
- Erythrohepatic protoporphyria
- Heme synthetase deficiency
- Ferrochelatase deficiency
- ClinicalTrials.gov lists trials that are studying or have studied Erythropoietic protoporphyria. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The Porphyrias Consortium is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with this condition through research. The Porphyrias Consortium has a registry for patients who wish to be contacted about clinical research opportunities.
For more information on the registry see: http://rarediseasesnetwork.epi.usf.edu/registry/index.htm