Peter L. Saltonstall Retires and Will Serve
in Consultative Role
QUINCY,
Mass., May 1, 2024 /PRNewswire/ -- 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 rarediseases.org.
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SOURCE National Organization for Rare Disorders (NORD)