Patients, Physicians and Research Collaboration Are Key to Porphyria Trials, Treatment
Kristen Wheeden is executive director of the American Porphyria Foundation. She 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. In this interview, she describes how her son’s diagnosis drew her to patient advocacy.