Michele Manion is the president and executive director of the PCD Foundation, which she co‐founded in 2002. Since that time, she has served in numerous leadership roles related to policy development, research acceleration and access to care for individuals with rare lung disorders, chairing the Office of Rare Diseases Research (ORDR) Coalition of Patient Advocacy Groups (CPAG) at the National Institutes of Health (NIH) for eight years and currently serving on the Public Advisory Roundtable (PAR) of the American Thoracic Society (ATS). Additionally, by focusing on collaboration with top pulmonary researchers around the world, she has been instrumental in positioning the PCD Foundation as a full partner in developing and supporting large PCD research networks in North America and Europe. These highly productive networks have formed the basis of the current PCD Foundation Clinical & Research Centers Network.
Michele received a B.S. in Health and Human Services from SUNY, was formerly certified as a clinical research coordinator and recently completed the Science of Small Clinical Trials course offered by the FDA. She is the parent of two adult children, one of whom has PCD. She lives in Minneapolis, Minnesota.