Matthew Pearl

Patient Advocate & Inspirational Speaker, Fanconi Anemia Research Fund & EveryLife Foundation

Matthew Pearl is 26, an individual with Fanconi Anemia and a patient advocate. He serves on several Nonprofits including: the Fanconi Anemia Research Fund (FARF); the Rare Action Network (RAN); the National Organization for Rare Disorders and the National Ability Center. He is on both the Utah Rare Disease Advisory Council (RDAC) and The Professional Ski Instructors of America – American Association of Snowboard Instructors Intermountain Board of Directors. Matthew obtained a B.S. degree from Westminster College, Missouri, with a major in Leadership Consulting in Organizations and minors in Social and Personality Psychology and Nonprofit Management. Matthew attended the Dana Farber Cancer Institute at Harvard as the first patient with FA to research FA. He speaks around the globe, bringing insight and inspiration to the Rare Disease Community.