Published 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 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 February 9, 2026 by NORD
Annual state report card highlights progress and persistent gaps in access to care for 30 million Americans WASHINGTON, D.C., Feb. 9, 2026 — Access to care for Americans living with rare diseases …
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 January 6, 2026 by NORD
Partnership focuses on delivering high-quality medical education to improve rare disease patient outcomes BOSTON AND WASHINGTON, D.C., January 6, 2026 – Medlive and the National Organization for Rare Disorders® are …
Continue reading “NORD Extends Exclusive CME Partnership with Medlive”
Read morePublished December 8, 2025 by NORD
NORWELL, Mass., Dec. 8, 2025 — The National Organization for Rare Disorders (NORD®), a leading rare disease patient advocacy organization, today announced the appointment of Kim Isenberg, a retired industry …
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 November 14, 2025 by NORD
Implementation of two new patient registries on the IAMRARE® platform funded by RDCA-DAP® DANBURY, Conn., Nov. 14, 2025 — The National Organization for Rare Disorders (NORD®), a leading national nonprofit …
Continue reading “NORD Launches New RFP for Patient Registries”
Read morePublished November 6, 2025 by NORD
National Organization for Rare Disorders (NORD®) Brings Together 100+ Wis. Families for a Day of Hope, Learning, and Community During National Family Caregivers Month WHAT: As National Family Caregivers Month shines a light on those who care for loved ones, the …
Read morePublished October 28, 2025 by NORD
On-the-go app helps patients and caregivers share health information to support rare disease research The National Organization for Rare Disorders (NORD®), a leading national nonprofit serving more than 30 million …
Continue reading “NORD Unveils IAMRARE Mobile App Companion to IAMRARE Registry Platform”
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