Published 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 18, 2025 by NORD
The Senate’s failure to advance the Give Kids a Chance Act through unanimous consent is deeply disappointing. For more than a year, thousands of rare disease advocates have engaged lawmakers …
Read morePublished December 16, 2025 by NORD
The National Organization for Rare Disorders (NORD) applauds the Department of Health and Human Services (HHS) for adding metachromatic leukodystrophy (MLD) and Duchenne muscular dystrophy (DMD) to the Recommended Uniform …
Read morePublished December 4, 2025 by NORD
NORD report shows 63 FDA vouchers driving breakthroughs for 47 rare pediatric diseases, 43 with no prior treatments — unprecedented progress for children left behind WASHINGTON, Dec. 4, 2025 — …
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 14, 2025 by NORD
For one powerful day in Milwaukee, more than 110 people impacted by rare diseases — patients, caregivers, families, clinicians, and advocates — came together to share something simple yet profound: …
Read morePublished November 10, 2025 by NORD
First published July 23, 2024. Updated November 10, 2025 with new content and revisions. The National Organization for Rare Disorders (NORD) released a new report showing the undeniable effectiveness of …
Continue reading “Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program”
Read more
Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
Please complete this form to access the requested resource.