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
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