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



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

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Establishing Evidence-based Guidelines for Diagnosis and Management of Liver Disease in Protoporphyrias

Rare Research Report: September 2023

Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications.

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Join RDCRN at Rare Disease Day at NIH on February 28

Don’t miss the in-person and virtual celebration of Rare Disease Day at NIH on Tuesday, February 28, 2023, from 9 am to 5 pm EST. Each year, the NIH’s National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center sponsor the event as part of the global Rare Disease Day observance.

Rare Disease Day at NIH. February 28, 2023. #RDDNIH.

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.