Congenital erythropoietic porphyria
Synonyms: CEP | Günther disease
Congenital erythropoietic porphyria or Günther disease is a form of erythropoietic porphyria characterized by very severe and mutilating photodermatosis.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version March 2024
Newly diagnosed with
Congenital erythropoietic porphyria?
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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.
The British Porphyria Association
The BPA is committed to advocating for, supporting and educating porphyria patients, relatives and medical professionals, so as to improve the quality of life for those living with the different types of porphyria. We promote disease awareness and the advancement of research into new therapies.
For a list of clinical trials in this disease area, please click here.