Luke Rosen

Luke Rosen is co-founder and board chair of KIF1A.ORG. Luke and Sally founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. In 2017 Luke left his career as an actor and writer to accelerate discovery of treatment for Susannah and children like her. With a focus on research strategy, policy and outcome measures, Luke works to educate and empower families affected by rare genetic diseases. His mission is to accelerate biotech innovation and forge efficient collaborations within the scientific and patient communities resulting in rapid discovery of treatment for KIF1A Associated Neurological Disorder. Luke also works on the research & early development team at Ovid Therapeutics, a New York based biotech focused on developing treatments for rare neurological diseases.

  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.