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 … Continue reading "World Anesthesia Day: The Critical Role of Pediatric Anesthesia for Children with Rare Disorders"...
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By Curtis Mar The medical marvel of anesthesia was demonstrated for the first time 178 years ago at Massachusetts General Hospital. That day is commemorated today by World Anesthesia Day. …
Read moreCouncil will advise and advocate on the needs of California’s rare disease community SACRAMENTO, CA, SEPTEMBER 30, 2024 — California Governor Gavin Newsom signed into law AB 2613, legislation that …
Read moreThe National Organization for Rare Disorders (NORD) announced two new requests for proposal (RFP) for grant funding related to Amyloidosis and Levy-Yeboa Syndrome (LYS). NORD’s Rare Disease Research Grant Program, …
Read moreBy Susanna Ray It took doctors several years to figure out what was wrong with Karman Kahambwe. And no wonder: the Congolese-American teenager living in Eastern Washington had …
Read moreSeptember 24, 2024 The National Organization for Rare Disorders (NORD) applauds the House of Representatives for passing the Give Kids a Chance Act, a major step toward providing more opportunities …
Read moreWASHINGTON, D.C., September 18, 2024 — Today, members of the House Energy & Commerce Committee unanimously voted to advance out of Committee the Give Kids a Chance Act (H.R. 3433), …
Read moreThe National Organization for Rare Disorders (NORD) has important information to share with you ahead of Medicare Open Enrollment as two new benefits of the Inflation Reduction Act, or IRA, …
Read moreBy Sydney Collier I was told at seven years old I wasn’t supposed to be alive. It sounds dramatic, but it’s the truth. An MRI told us it was true: …
Continue reading “Beyond Expectations: A Paralympian Equestrian Beats the Odds to Achieve Her Dream”
Read moreThe National Organization for Rare Disorders (NORD) released a new report showing the undeniable effectiveness of the Rare Pediatric Disease Priority Review Voucher (RPD PRV) program, designed to incentivize the …
Continue reading “Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program”
Read moreBy Sarah Cortell Vandersypen, CFRE, Executive Director, United MSD Foundation On May 9, 2016, Willow Cannan, the two-year-old daughter of Tom Cannan and Amber Olsen, was diagnosed with a terminal …
Continue reading “Guest Blog: One Mother’s Mission Turns Into a Global Movement for a Cure for MSD”
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