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…
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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…
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Free, online learning series and career exploration toolkit introduce aspiring scientists to rare disease research through real-world case studies NORWELL, Mass., Sept. 15, 2026 — The National Organization for Rare…
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NORD Submits Formal Comments to CMS Urging Changes to Align the Final Rule with Congressional Intent and Protect Medically Frail People with Rare Diseases NORWELL, Mass., July 31, 2026 —…
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On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare.
Read moreThe CCHS Family Network is ending the isolation and angst of families dealing with a rare diagnosis where knowledge and treatment is extremely limited.
Read moreThanks to the support of our partners and donors, NORD has launched new initiatives that empower the rare disease community in every state and strengthen the patient voice in Washington D.C.
Read moreNORD to Build and Launch 20 Natural History Studies Based on Lottery System
Read moreConnecting patients with Pachyonychia Congenita, PC Project says that it is “all about love”.
Read moreWhen you or a beloved family member is facing serious illness, the last thing you need to be concerned with is how you will pay for the medication.
Read moreSudden Infant Death Syndrome (SIDS) is the latest rare disease to have trended on Facebook, following the release of a new study in Pediatrics journal on December 2. The study says that …
Continue reading “New SIDS Study Says Other Factors May Increase Risk”
Read moreEducation has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related …
Continue reading “Be a Hero: Help NORD Educate Current and Future Medical Professionals”
Read moreThe National Brain Tumor Society Tumor is a non-profit organization whose mission is to inspire hope and provide leadership within the brain tumor community.
Read moreNext week, a Food and Drug Administration panel of experts will hold the first of two meetings to review two drugs designed to slow the muscle wasting effects associated with Duchenne …
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