New Initiative Will Bring Together NORD® Rare Disease Centers of Excellence to Address Challenges in Two Rare Autoimmune Diseases and Develop Approaches that Could Benefit Other Rare Disease Communities WASHINGTON,…
Read article
Statement from Pam Gavin, President and Chief Executive Officer NORWELL, Mass., October 14, 2026 — The National Organization for Rare Disorders (NORD®) applauds the U.S. Food and Drug Administration (FDA)…
Read article
BioMarin, Jazz Pharmaceuticals, and Otsuka CEOs to Join NORD CEO to Examine What it Takes to Turn Scientific Advancements into Patient Progress WASHINGTON, D.C. and NORWELL, Mass., October 6, 2026…
Read article
Acting FDA Commissioner Kyle Diamantas, NIH Director Jay Bhattacharya, and Director of National Health Communications for the Office of the Surgeon General Stephanie E. Haridopolos to Address 900+ Attendees at…
Read article
The Centers for Medicare & Medicaid Services (CMS) has finalized new Medicaid community engagement (work) requirements that states must begin implementing by January 1, 2027. To help state policy leaders…
Read article
Washington, D.C., January 3, 2019 – Today, the National Organization for Rare Disorders (NORD) announced the completion of extensive additions and improvements to its Rare Disease Database, which serves as …
Read moreWashington, D.C., December 20, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on …
Continue reading “NORD Issues Statement on FDA’s Impending Expanded Access Call Center”
Read moreLet’s get started! 10 weeks to go until Rare Disease Day! Share your plans!
Read moreWashington, D.C., December 18, 2018 — A new report commissioned by the National Organization for Rare Disorders (NORD) and published today by the IQVIA Institute, demonstrates that the seven-year market …
Read moreThis June in Houston, Texas, the 2019 Living Rare, Living Stronger | NORD Patient & Family Forum will bring the rare community together with physicians, medical students and allied health …
Read moreFor more than 35 years, NORD has been the voice of the rare disease community. Whether it’s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to …
Continue reading “Year-End Message from NORD’s President and CEO”
Read moreWashington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on …
Continue reading “NORD Publishes Report on Post-Transplant Lymphoproliferative Disease”
Read moreDownload NORD’s new fact sheet on the Orphan Drug Act.
Read moreNORD’s Educational Initiatives team spoke with Jennifer Shoskes, a Northeastern University graduate student and NORD Student Chapter Leader. In this interview, Jennifer talks about her inspiration for starting a NORD …
Continue reading “Featured Student: Jennifer Shoskes”
Read moreOne of NORD most popular resources is the Rare Disease Database. In any given month, 80% of the traffic to the website goes to one of NORD’s Rare Disease Reports. …
Continue reading “NORD Creates Rare Disease Patient & Caregiver Resource Center”
Read morePlease complete this form to access the requested resource.
