Hepatoerythropoietic porphyria
Synonyms: HEP
A rare form of chronic hepatic porphyria characterized by bullous photodermatitis.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Reference: Access aggregated data from Orphanet at Orphadata.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version May 2024
Newly diagnosed with
Hepatoerythropoietic porphyria?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Canadian Association for Porphyria
We deliver evidence-based information and support to patients with porphyria, their families, health care providers and the general public across Canada. We help achieve standards and evidence-based comprehensive care for all people with porphyria throughout their lifespans.
National Association of Porphyrias Serbia
Our organization is dedicated to raising awareness, providing support, and advocating for individuals and families affected by porphyria. We strive to improve diagnosis, treatment, and quality of life for those living with this condition.
Clinical Trials
For a list of clinical trials in this disease area, please click here.