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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Join the RDCRN for FDA-NIH Rare Disease Day, February 27-28, 2025
Don’t miss the in-person and virtual celebration of FDA-NIH Rare Disease Day on February 27-28, 2025.
Rare Research Report: December 2024
Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications.
Porphyrias Over Time: What We’re Learning from a Natural History Study
To learn more about the natural history of the porphyrias, researchers are conducting a “
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.