Featured News
Pamela Gavin, CEO
Get to Know NORD’s New CEO: Four Questions with Pam Gavin
- Featured News
- NORD Leadership
Pamela Gavin was recently named NORD’s new CEO, following Peter Saltonstall’s retirement. After serving as a volunteer, Pam joined NORD in 2012 as our first Chief Operating Officer and most recently served as Executive Vice President.
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National Organization for Rare Disorders (NORD) Names Pamela K. Gavin as CEOPeter Saltonstall Retires and Will Serve in Consultative Role
- Press Release
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News & Articles
Finding Purpose in Advocacy: Jenny’s Story in Honor of Rare Cancer Day
Published September 30, 2023 by NORD
Categorized in -
- Uncategorized
NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here. At 8 years old, Jenny was diagnosed with Familial …
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The Importance of Advancing Treatment Options: Toni’s Story in Honor of Rare Cancer Day
Published September 30, 2023 by NORD
Categorized in -
- Patient Stories
- Patient Stories>Voices of Rare Cancer
NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here. My name is Toni, and in 2015, I was …
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The Privilege of Access to Care: Jennifer B.’s Story in Honor of Rare Cancer Day
Published September 30, 2023 by NORD
Categorized in -
- Patient Stories
- Voices of Rare Cancer
NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here. My name is Jennifer and I am from Holly …
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Rare Cancer Continuing Medical Education
Published September 21, 2023 by NORD
Categorized in -
- Medical
NORD partners with Platform Q Health to provide accredited online CME courses for healthcare providers. This online platform allows us to reach a large number of learners with accessible, engaging …
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Statement from NORD CEO on Announcement by Yann Le Cam
Published September 15, 2023 by NORD
Categorized in -
- Featured News
The announcement by our friend and fellow rare advocate Yann Le Cam that he will step down in March 2024 from the role of CEO of EURORDIS provides an opportunity …
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Request for Applications: New Patient Registries to Join IAMRARE and RDCA-DAP in 2024
Published September 1, 2023 by NORD
Categorized in -
- Research
The National Organization for Rare Disorders (NORD®) announces a request for applications for the implementation of two new patient registries on the IAMRARE platform. Funding is made available through the …
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Volunteer Spotlight: How Judy Advocated for Better Access to Care for Rare Hawaii Residents
Published August 19, 2023 by NORD
Categorized in -
- Advocacy
- Patient Stories
This year, NORD Advocate Judy A. testified before the Hawaii state legislature, leading Hawaii to pass a law making it easier for residents with rare diseases to access out-of-state physicians …
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Kerry’s Kaleidoscope of Rare Disease Stories
Published August 19, 2023 by NORD
Categorized in -
- Patient Stories
By Kerry Wong I am writing a book because there are so many incredible stories that need to be told, and so many people who need to hear (or read) …
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National Organization for Rare Disorders Announces More Than $100,000 in Grant Funding Available for Rare Disease Research
Published August 15, 2023 by NORD
Categorized in -
- Research
Three New RFPs Now Open for Qualified Researchers of AVM, LYS, and MMIHS Today, the National Organization for Rare Disorders (NORD®) announced three new grant funding opportunities related to the …
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Delaware Enacts Law to Address Needs of Rare Disease Patients and Families
Published July 26, 2023 by NORD
Categorized in -
- Advocacy
- Press Releases
Delaware is the 27th state to establish a Rare Disease Advisory Council to raise awareness and inform state health policies. July 26, 2023, Dover, DE– Today, patients and families in …
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