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Impact Features

Dynamic teams of physicians, researchers, patients, and patient advocates work together in each RDCRN consortium to advance rare diseases research. This page collects feature articles highlighting both the work of the RDCRN consortia and the people behind that work. Choose the consortium acronym at the top of the page to view features articles related to that consortium.

Click here for a complete list of all RDCRN consortia.

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

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

December 17, 2024

To learn more about the natural history of the porphyrias, researchers are conducting a “

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

Headshot of Mohamed Kazamel, MD

January 10, 2023

Mohamed Kazamel, MD, is an associate professor of neurology at the University of Alabama at Birmingham (UAB). He serves as director of the UAB…

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Patient Advocate Spotlight: Kristen Wheeden Steps into Lead Role for RDCRN Patient Groups

Kristen Wheeden and her son, Brady, standing on their porch

August 2, 2021

Kristen Wheeden is executive director of the American Porphyria Foundation. She is also the incoming chair of the Rare Diseases…

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