Protoporphyria

Patient Registry

RDCRN - Porphyrias Consortium

The Porphyrias Consortium is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with this condition through research. The Porphyrias Consortium has a registry for patients who wish to be contacted about clinical research opportunities.

For more information on the registry see: https://www.rarediseasesnetwork.org/cms/porphyrias/registry

Last updated on 04-27-20

Name: American Porphyria Foundation 4915 St. Elmo Avenue Suite 105
Bethesda, MD, 20814, United States
Phone: +1-301-347-7166 Toll Free: 1-866-273-3635 Fax : +1-301-312-8719 Email: porphyrus@porphyriafoundation.com Url: https://porphyriafoundation.org/
Name: American Association for the Study of Liver Diseases 1001 North Fairfax, 4th floor
Alexandria, VA, 22314, United States
Phone: 703–299–9766 Fax : 703–299–9622 Email: aasld@aasld.org Url: http://www.aasld.org/
Name: American Liver Foundation 39 Broadway, Suite 2700
New York, NY, 10006, United States
Phone: +1-212-668-1000 Toll Free: +1-800-465-4837 (Helpline) Email: https://liverfoundation.org/for-patients/contact-us/ Url: https://liverfoundation.org/
Name: European Porphyria Network Email: contact@porphyria.eu Url: http://porphyria.eu/en/content/home

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The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

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