About the Porphyrias Consortium

The Porphyrias Consortium includes six of the leading porphyria centers in the United States, as well as seven satellite sites, that provide expertise and experience in the diagnosis and management of patients with all the porphyrias. The staff at each center includes porphyria physicians, researchers, and clinical research coordinators. Together with United Porphyrias Association, our only designated patient advocacy group, the Porphyrias Consortium enables a large-scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from these rare disorders.

Here you can find information on the porphyrias for patients, their families, healthcare professionals, and other interested parties. We also list our active studies and contact information for those who are interested in learning more or participating.