Pamela K. Gavin is the new CEO of the National Organization For Rare Disorders in Quincy, Massachusetts. She succeeds Peter L. Saltonstall who is retiring after serving as president & CEO since 2008. Saltonstall will continue in an advisory role with NORD.
Driven by a family connection to rare disease, Gavin joined the nonprofit in 2012 as NORD’s first chief operating officer. She developed and launched many of NORD’s initiatives including the NORD Rare Disease Centers of Excellence, the first U.S. network comprised of 40 leading medical centers and institutions dedicated to diagnosing, treating, and researching all rare diseases.
As NORD’s COO, Gavin led the development of IAMRARE®, the first natural history patient registry platform for the rare disease community; the Rare Disease Cures Accelerator, a data and analytics platform jointly with the U.S. Food and Drug Administration (FDA) and Critical Path Institute; and RareLaunch®, NORD’s patient advocacy organization incubator which guides people seeking to create a rare disease patient advocacy organization.
She also expanded NORD’s service offerings including its RareCare® patient and caregiver assistance programs which has provided nearly $175 million in financial support within the past five years.
Before joining NORD, Gavin held several roles focused on improving healthcare safety and delivery, including as a government consultant in charge of the development of a Federal Safety Reporting Portal used by the National Institutes of Health (NIH), FDA, healthcare providers, and other key segments.
As senior director, Strategic Business Initiatives at the University of Pittsburgh Medical Center, Gavin was responsible for bringing to market new concepts and emerging technologies that improved healthcare delivery. She was also an executive and founder of SafeCare Systems, which developed one of the industry’s safety management information systems, and she was a division director for the Harvard Risk Management Foundation.
