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Diseases

Genetic and Rare Diseases Information Center (GARD)

Porphyria


Research

Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Porphyria. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • Orphanet lists European clinical trials, research studies, and patient registries enrolling people with this condition. 

Patient Registry

  • 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: http://rarediseasesnetwork.epi.usf.edu/registry/index.htm
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