Porphyria Resources

United Porphyrias Association

The United Porphyrias Association (UPA) is committed to improving the health and quality of life of all patients with porphyrias and their families.  It works relentlessly to advance disease awareness, support research, and help in developing new therapies for all types of porphyria. UPA’s Scientific Advisory Board consists of dedicated, expert physicians and scientists who provide advice to the Association and to patients with questions about porphyrias.  The UPA works closely and in partnership with the UTMB Porphyria Center and the Galveston Porphyria Laboratory, other academic centers in the Porphyrias Consortium and the American Porphyria Expert Collaborative (APEX).

The UPA has developed an innovative and informative website as well as written resources about the different porphyrias for the porphyria community. 

The UPA has offices in Bethesda, Maryland and can be reached anytime at or 1-800-868-1292. Visit to become a member and receive regular news and updates.


Porphyrias Consortium

The Rare Diseases Clinical Research Network (RDCRN) Porphyrias Consortium provides expertise and experience in the diagnosis and treatment of patients with porphyria. Consisting of six leading porphyria centers in the United States, the Consortium also supports collaborative research and training.

Member centers include UTMB Health, the Icahn School of Medicine at Mt. Sinai (New York, NY), the University of Alabama at Birmingham, the University of California at San Francisco, the University of Miami (FL), the University of Utah School of Medicine (Salt Lake City, NY), the University of Washington (Seattle, WA), and Wake Forest University Health Sciences (Winston-Salem, NC).

Consortium investigators meet monthly in-person and on conference calls, and receive support through the RDCRN. The RDCRN provides the Consortium with data management support through its Data Management and Coordinating Center at the University of South Florida, as well as infrastructure support such as protocol development, data entry and warehousing, statistical consultation, site monitoring.

The Consortium has conducted industry-supported clinical trials, as well as several other studies, including a longitudinal study of all of the porphyrias.

For more information and access to the Consortium's patient registry and resources, visit