Pam Gavin

Pamela K. Gavin is Chief Executive Officer of the National Organization for Rare Disorders (NORD), the nation’s leading nonprofit representing more than 350 patient advocacy organizations advancing care, research, policy, and innovation for people living with rare diseases. A nationally recognized leader in rare disease infrastructure and patient-centered research, Pam has helped shape the policy and scientific frameworks that support therapeutic development across the rare disease landscape. Her expertise spans patient registries, natural history studies, informed consent, data integrity, and patient safety. Her work has been published in Pharmaceutical Medicine, Nature Genetics, Expert Opinion on Orphan Drugs, and MIT Press. Since joining NORD in 2012 as its first Chief Operating Officer, Pam has led the development of several foundational initiatives, including the Rare Disease Centers of Excellence®, IAMRARE®, and the Rare Disease Cures Accelerator, created in collaboration with the U.S. Food and Drug Administration and Critical Path Institute. Driven by a personal connection to rare disease, she is focused on advancing scalable, coordinated solutions that shorten time to diagnosis, accelerate innovation, and expand access to life-changing therapies.