Marybeth McAfee | VP, Community and Medical Affairs
National Organization for Rare Disorders

Marybeth McAfee, MA, GC, is Vice President of Community and Medical Affairs at the National Organization for Rare Disorders (NORD®), where she leads Medical Affairs, Community Engagement, Membership, Educational Initiatives, and Information Services. She also oversees NORD’s Rare Disease Centers of Excellence program, helping drive collaboration across patients, families, advocacy organizations, clinicians, researchers, and health systems to strengthen rare disease diagnosis, care, and readiness for research and clinical trials. Trained as a genetic counselor, Marybeth has spent most of her career in non-clinical roles focused on improving how people living with rare diseases find trusted information, specialists, and pathways to care. Before becoming Vice President, she served as NORD’s Director of Medical Affairs and helped launch and grow the NORD Rare Disease Centers of Excellence Network. Prior to joining NORD, she worked at the NIH’s Genetic and Rare Diseases Information Center (GARD) and led programs related to rare disease registries and patient-focused therapy development. Her background also includes genetics research at Harvard. Marybeth is especially passionate about building practical infrastructure that makes rare disease care more connected, equitable, and scalable, and about ensuring that patient and family perspectives inform work across the therapeutic development pathway.