Published June 3, 2026 by NORD
Washington, D.C. — (June 3, 2026) Yesterday 48 non-profit, non-partisan patient organizations issued a statement in response to the interim final rule implementing the new Medicaid work reporting requirement provisions …
Read morePublished June 2, 2026 by NORD
Healthcare policies are most effective when they work for the most medically complex populations, including people living with rare diseases. The National Organization for Rare Disorders (NORD®) is concerned that the newly released CMS …
Read morePublished May 22, 2026 by NORD
Congress is currently considering the Access to Genetic Counselor Services Act (H.R. 6280/S. 3607), a bipartisan piece of legislation that would recognize genetic counselors as Medicare providers, allowing them to …
Continue reading “Access to Answers — Bridging the Gap to Genetic Expertise”
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 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 5, 2026 by NORD
Leaders across research, clinical care, industry, and patient advocacy convene to accelerate rare disease breakthroughs from discovery to real-world patient impact Norwell, Ma., Feb. 5, 2026 — The National Organization …
Read morePublished December 3, 2025 by NORD
NORD’s growing network, now 46 institutions strong, represents a coordinated nationwide effort to strengthen rare disease care and research collaboration NORWELL, Mass., Dec. 3, 2025 — The National Organization for …
Read morePublished August 21, 2025 by NORD
WASHINGTON, D.C., Aug. 21, 2025 — The future of rare disease care and innovation will take center stage in the nation’s capital this fall. The National Organization for Rare Disorders …
Read morePublished July 16, 2025 by NORD
Annual Awards Celebrate Outstanding Contributions to Rare Disease Treatments, Advocacy, and Research QUINCY, Mass., July 16, 2025—The National Organization for Rare Disorders (NORD®) is honoring a distinguished group of industry …
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