About the Porphyrias Consortium

Disorder Definitions

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.

Our Mission

The mission of the Porphyrias Consortium is to expand knowledge about the porphyrias and thereby benefit patients and their families.

Within the framework of collaboration, the Porphyrias Consortium provides new and current information about the porphyrias to patients and their families, physicians and other health professionals, and the public. In addition, the Porphyrias Consortium provides training to young physicians who will be the future medical and research experts for these rare disorders.