Erythropoietic uroporphyria associated with myeloid malignancy
A rare porphyria characterized by a pre-existing myeloid disorder skin fragility and blistering on the exposed areas and hemorrhagic bullae typically on the back of the hands. Urine plasma and fecal porphyrins are increased.
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 April 2024
Newly diagnosed with
Erythropoietic uroporphyria associated with myeloid malignancy?
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.
Louisiana Metabolic Disorders Coalition
We support, educate, and advocate for patients & families affected by metabolic disorders.
Mississippi Metabolics Foundation
Our mission at Mississippi Metabolics Foundation (MMF) is to advocate, educate, and support families in MS affected by genetic metabolic disorders/inborn errors of metabolism (IEM's). MMF promotes initiatives and further advancements in legislation, education, research, clinical trials, studies, therapies, targeted treatments, and eventual cures for IEM’s and all rare diseases.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
United Porphyrias Association
The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias.
Clinical Trials
For a list of clinical trials in this disease area, please click here.