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Expanding knowledge of the porphyrias by developing new strategies and methods for diagnosis, treatment, and prevention of illness and disability.



Research Studies

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Discover opportunities to participate in research and help further innovations in care for porphyrias patients.

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National Survey Reveals Impact of COVID-19 on People Living with Rare Diseases and Their Families

The devastating impact of COVID-19 on the general population is well-documented—but less is known about the millions of people living with rare diseases.

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PC Pilot and Feasibility Program

The Porphyria Consortium provides a novel support mechanism for trainees, postdocs, and junior faculty who want to pursue new directions in porphyria. The PC leadership welcomes applicants from across the U.S. and will strive to provide a rapid review and constructive comments for applicants.