Latest News

Pre-Doc Preparatory Program (P³) in Translational Research

Do you have a rare disease research coordinator, genetic counseling assistant, or technician who may benefit from formal training in clinical and translational research? If so, we invite you to nominate them for the one-year Pre-Doc Preparatory Program (P³) in Translational Research from October 2025 through May 2026, offered by ITMAT Education at the University of Pennsylvania in partnership with the CHOP Leukodystrophy Center.

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Rare Research Report: December 2024

December 18 2024

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Porphyrias Over Time: What We’re Learning from a Natural History Study

December 17 2024

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Porphyrias Over Time: What We're Learning from a Natural History Study

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

February 16 2024

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Flyer advertising the survey appearing on a laptop screen.

Join the RDCRN for Rare Disease Day at NIH on February 29, 2024

February 13 2024

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Rare Disease Day at NIH. February 29, 2024. #RDDNIH.

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

September 26 2023

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

Rare Research Report: September 2023

September 19 2023

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Join RDCRN at Rare Disease Day at NIH on February 28

February 21 2023

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

Senior Researcher Spotlight: Mohamed Kazamel Investigates Autonomic Neuropathy in the Porphyrias

January 10 2023

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