Séan Henderson, MD
President and Chair
Dr. Séan Henderson is a physician, healthcare executive, rare disease advocate, and father of a child living with infantile-onset SPG4. His personal and professional experiences inspired the creation of the GRACE Network for Rare Disease, an organization dedicated to accelerating research while building practical systems of support for families navigating rare disease.
Throughout his career, Dr. Henderson has led large healthcare organizations, developed innovative clinical programs, and worked at the intersection of medicine, administration, and systems improvement. As President and Chair, he provides the strategic vision for the Foundation, focusing on research advancement, collaboration across institutions, family-centered initiatives, and organizational growth.
Primary Responsibilities
- Strategic leadership and organizational vision
- Research priorities and program development
- Institutional and foundation partnerships
- Board leadership and governance
- Public representation of the Foundation
