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Patient Advocate Spotlight: Kristen Wheeden Steps into Lead Role for RDCRN Patient Groups sheila.wolfer@… Mon, 08/02/2021 - 21:09

Kristen Wheeden and her son, Brady

Kristen Wheeden and her son, Brady

Kristen Wheeden is executive director of the American Porphyria Foundation. In this interview, she describes how her son’s diagnosis drew her to patient advocacy. Wheeden is also the incoming chair of the Rare Diseases Clinical Research Network (RDCRN)’s Coalition of Patient Advocacy Groups (CPAG), after serving last year as co-chair.

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The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). The RDCRN websites are hosted by the network’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, which is funded by NCATS and the National Institute of Neurological Disorders and Stroke (NINDS) under grant number TR002818.