National Organization for Rare Disorders Names Pamela Gavin as CEO

The National Organization for Rare Disorders (NORD) announced today that Pamela K. Gavin has been named CEO, effective immediately. She succeeds Peter L. Saltonstall, who announces his retirement and served as President and CEO since 2008. After a transition period, Saltonstall will continue in an advisory role with NORD.

Founded in 1983 following the enactment of the Orphan Drug Act, NORD is the nation’s leading and longest-standing nonprofit organization working at the intersection of care, research, policy and community for patients with rare diseases. NORD’s members are 340 patient organizations.

Driven by a family connection to rare disease, Gavin joined the company in 2012 as NORD’s first Chief Operating Officer. She developed and launched many of NORD’s groundbreaking 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.

“I want to thank the members and Board of NORD for enabling me to continue my work for the rare disease community in this new role,” stated Gavin. “Peter’s leadership of NORD for the past 16 years has enabled NORD to grow and significantly impact the rare disease community, and I want to build on that strong foundation.”

Saltonstall said: “Pam has been with NORD for a dozen years and has gained the respect of the entire rare disease and orphan drug community for her skills in creating and advancing rare disease research and programs. Working with Pam has been a highlight of my career. Her ability to spot opportunities and turn a vision into a reality is one of her greatest talents.”

“Pam is an accomplished healthcare executive and a fierce patient advocate with the proven ability to align multiple stakeholders to reimagine what’s possible and transform the lives of patients and families living with a rare disease,” said Kay Holcombe, Chair of NORD’s Board of Directors. “Under Peter’s direction, NORD has established initiatives and national policies that have vastly improved the lives of millions of patients with rare diseases. We are grateful for his contributions and welcome his ongoing guidance and advice.”

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 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 greatly 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.

“We’re on the cusp of dynamic change, opportunities and advancements for the rare disease community, but we must elevate rare diseases as an urgent public health challenge that affects us all,” Gavin said. “Collectively, we need to improve the healthcare ecosystem’s ability to support people with rare diseases, enhance quality of care, shorten the time to diagnosis, and accelerate the development of treatments, and ideally, cures.”

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 Pittsburg 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 industry’s safety management information systems, and she was a division director for the Harvard Risk Management Foundation.

Gavin received her MBA in Healthcare Management from Northeastern University and her BA in Biology from Smith College.

Saltonstall has been NORD’s president and CEO since 2008 following the retirement of NORD founding president Abbey Meyers. Under Saltonstall’s leadership, NORD evolved from a grassroots organization to an internationally renowned nonprofit trusted for its integrity and independence.

He developed and forged close relationships with the NIH, FDA and other U.S. government agencies and expanded NORD’s partnerships and alliances with global organizations including EURORDIS, a nonprofit alliance of more than 1,000 rare disease patient organizations from 74 countries.

“A tireless collaborator guided by the belief that advances for the rare disease community can best be achieved through joint efforts, Peter personified the NORD mindset ‘Alone we are rare. Together we are strong,'” said Holcombe. “Peter’s accomplishments on behalf of the rare disease community have been numerous and life changing. We are grateful for his 16 years of service and look forward to his continued insight and impact.”

High resolution photos of Pamela Gavin for media use:

  • Pamela Gavin Photo 1 (Pamela Gavin named CEO of the National Organization for Rare Disorders; courtesy: National Organization for Rare Disorders)
  • Pamela Gavin Photo 2 (NORD’s new CEO, Pamela Gavin, with her nephew, Trevor, who was diagnosed with a rare disease at age 2; courtesy: Pamela Gavin)

About the National Organization for Rare Disorders (NORD)
With a more than 40-year history of advancing care, treatments and policy, the National Organization for Rare Disorders (NORD) is the leading and longest-standing patient advocacy group for the 30 million Americans living with a rare disease. An independent 501(c)(3) nonprofit, NORD is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 340 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research and policy. For more information, visit