Published August 28, 2026 by NORD
The National Organization for Rare Disorders (NORD®) mourns the passing of former U.S. Senator Nancy Kassebaum Baker, whose leadership helped change the course of history for people living with rare …
Continue reading “Tribute to Senator Kassebaum Baker”
Read morePublished July 28, 2026 by NORD
Additional institutions in California, New York and North Carolina strengthen a national network connecting more than 170 academic medical centers, research institutions, and children’s hospitals to advance rare disease care …
Read morePublished June 9, 2026 by NORD
Washington, D.C. — June 9, 2026 — The National Organization for Rare Disorders (NORD®), representing the 30 million Americans living with rare diseases, today announced the appointment of Kathryn Lowell …
Read morePublished May 19, 2026 by NORD
H.46 makes Vermont the 34th state in the nation – including all states in New England – to give rare disease patients a formal voice in state government. Montpelier, VT, …
Continue reading “Vermont Governor Signs Rare Disease Advisory Council into Law”
Read morePublished May 12, 2026 by NORD
Provided by Michael Beard, Vice President of Federal and Global Public Policy The National Organization for Rare Disorders (NORD) recognizes that the departure of the FDA Commissioner is a pivotal …
Continue reading “NORD Statement on FDA Leadership Change”
Read morePublished May 6, 2026 by NORD
Advancing Innovation in Rare Disease Research At NORD’s 2nd Annual Rare Disease Scientific Symposium, the central question was not whether rare disease innovation is possible, but how to make it …
Continue reading “2026 Rare Disease Scientific Symposium: Event Recap and Recordings”
Read morePublished March 24, 2026 by NORD
WASHINGTON, D.C. — March 24, 2026 — The National Organization for Rare Disorders (NORD®) today announced the appointments of Michael J. Beard as Vice President of Federal and Global Public …
Read morePublished March 12, 2026 by NORD
NORWELL, Mass., and MIAMI, Fla. (March 12, 2026) – The National Organization for Rare Disorders (NORD®) and OpenEvidence today announced a new partnership to expand access to trusted, expert-reviewed rare …
Read morePublished February 24, 2026 by NORD
NORD is encouraged by efforts to strengthen and clarify regulatory tools that advance rare disease treatments. For conditions with extremely small patient populations, where traditional clinical trials are difficult to …
Read morePublished February 23, 2026 by NORD
Nationwide initiative encourages health-care providers to boost rare-disease knowledge and early diagnosis BOSTON and NORWELL, Mass., FEB 23, 2026 – In recognition of Rare Disease Day, the National Organization for Rare Disorders (NORD®) …
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