Luke Rosen

Luke Rosen is the founder of KIF1A.ORG, a nonprofit organization working to discover treatment for KIF1A, a rare genetic disease. Luke and his wife, Sally,  started the foundation in 2016 when their daughter was diagnosed with KIF1A. KIF1A.ORG is a patient-led foundation with a growing registry and active core of patients and caregivers.


Collaborating closely with the scientific community, the foundation plays a central role in research and innovation leading to treatment of rare, neurological diseases. Luke also leads the Patient Engagement initiative at Ovid Therapeutics, a rare disease biotech in New York City.

  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a group of patient advocacy professionals dedicated to the overall advancement of the rare disease patient advocacy professional ecosystem and landscape. Membership and participation in RAM is subject to the observance of the established Code of Conduct for Membership ("Code of Conduct") and the acceptance of the established and adopted RAM Process Document. All members and affiliates of RAM vow to abide by the established Code of Conduct. Any RAM member or affiliate who may violate the Code of Conduct in parts and/or in its entirety will be subject to immediate removal from the RAM membership and/or affiliation.