Porphyria Resources

American Porphyria Foundation

Founded in 1982, the American Porphyria Foundation (APF) is an active and effective patient support group that helps researchers engage with the community and recruit patients for studies, and provides resources for patients, families, and healthcare providers. The APF raises funds for research and development.

Of great importance is the APF's "Protect the Future" fund, which endows training for new porphyria specialists and scientists at academic institutions like UTMB Health.

APF members receive email newsletters, and access to many resources, including access to conference calls with top researchers in the field.

For more information and access to the APF's patient resources, including a database of safe and unsafe drugs, visit http://www.porphyriafoundation.com.

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 porphryia 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 https://www.rarediseasesnetwork.org/cms/porphyrias.