Luke Rosen

New York City

Luke Rosen is the founder of KIF1A.ORG, INC. After his young daughter was diagnosed with a rare genetic disease, Luke and his wife, Sally, started the foundation with a mission to drive science and discover a cure for Susannah’s disease, KIF1A. Connecting families and encouraging research, KIF1A.ORG is also active in policy regarding patient rights, shared data and access to genetic testing. A published author and teacher, Luke also brings to the rare disease community a background of advertising and public relations.