Pamela Gavin, CEO
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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Data will be used to help improve policy, access, resources WASHINGTON, DC, October 21, 2024 – Today, the National Organization for Rare Disorders (NORD) introduced the Living Rare Study, a …
Read moreBy Curtis Mar The medical marvel of anesthesia was demonstrated for the first time 178 years ago at Massachusetts General Hospital. That day is commemorated today by World Anesthesia Day. …
Read moreCouncil will advise and advocate on the needs of California’s rare disease community SACRAMENTO, CA, SEPTEMBER 30, 2024 — California Governor Gavin Newsom signed into law AB 2613, legislation that …
Read moreThe National Organization for Rare Disorders (NORD) announced two new requests for proposal (RFP) for grant funding related to Amyloidosis and Levy-Yeboa Syndrome (LYS). NORD’s Rare Disease Research Grant Program, …
Read moreBy Susanna Ray It took doctors several years to figure out what was wrong with Karman Kahambwe. And no wonder: the Congolese-American teenager living in Eastern Washington had …
Read moreSeptember 24, 2024 The National Organization for Rare Disorders (NORD) applauds the House of Representatives for passing the Give Kids a Chance Act, a major step toward providing more opportunities …
Read moreWASHINGTON, D.C., September 18, 2024 — Today, members of the House Energy & Commerce Committee unanimously voted to advance out of Committee the Give Kids a Chance Act (H.R. 3433), …
Read moreThe National Organization for Rare Disorders (NORD) has important information to share with you ahead of Medicare Open Enrollment as two new benefits of the Inflation Reduction Act, or IRA, …
Read moreBy Sydney Collier I was told at seven years old I wasn’t supposed to be alive. It sounds dramatic, but it’s the truth. An MRI told us it was true: …
Continue reading “Beyond Expectations: A Paralympian Equestrian Beats the Odds to Achieve Her Dream”
Read moreThe National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition (RDDC) have unveiled the findings of a groundbreaking national survey aimed at illuminating the barriers faced by …
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