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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. Catch up on the latest RDCRN research below.Jump to:

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

December 17 2024

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

February 16 2024

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

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

Rare Research Report: September 2023

September 19 2023

Join RDCRN at Rare Disease Day at NIH on February 28

February 21 2023

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

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

January 10 2023

Training Program for Clinical Research in Rare Disease Launches New Session

November 9 2022

Screenshot from a presentation on the Rare Diseases Research R25 Curriculum Grant