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