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 "A Thank You to NORD’s Volunteers"...
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It is National Volunteer Week, which has us reflecting on the tremendous contributions of NORD’s volunteers across the country who help create, elevate, and promote our work on behalf of …
Continue reading “A Thank You to NORD’s Volunteers”
Read moreThe Centers for Medicare & Medicaid Services (CMS) is looking to hear from our community about how the Inflation Reduction Act (IRA) should work. The IRA was signed into law …
Read moreUPDATE: April 24, 2023 — 33 Patient and Provider Groups Applaud Supreme Court Ruling, Urge Courts to Preserve FDA’s Authority Our 33 organizations, representing patients with serious health conditions, applaud …
Continue reading “Why the Mifepristone Ruling Threatens All FDA-Approved Drugs”
Read moreKitt C. I was officially diagnosed with tumor necrosis factor receptor-associated periodic syndrome (TRAPS) on May 31, 2022. After years of experiencing illness from flares, I finally found the answer …
Continue reading “The Importance of Understanding: Kitt’s Rare Disease Story”
Read moreThe Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP®) is an integrated database and analytics hub developed by Critical Path Institute (C-Path) and NORD through a collaborative grant from the …
Read moreJoin Kasey Baker in running a local race or donate to her efforts to raise awareness and celebrate 40 years of NORD, here. After seeing the daily struggles of friends …
Continue reading “Why I’m Running 40 Road Races for Rare Diseases This Year”
Read moreBy Peter L. Saltonstall and Tara Zier For years, famed singer Céline Dion dealt with mysterious symptoms of severe muscle spasms and stiffening in her limbs that hampered her ability …
Continue reading “The Celine Effect: Stiff Person Syndrome Gains a Powerful Voice”
Read moreBy Catara C. Tira is a rockstar; she is constantly bringing so much joy and light to everyone surrounding us. To her, she’s no different than anyone else and treats …
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Read moreWatch CNBC’s Rare Disease Day interview with NORD President and CEO Peter L. Saltonstall and NORD Rare Disease Center of Excellence Director, Dr. Olaf Bodamer of Boston Children’s Hospital, where …
Read moreBy Debbie Drell I’ve been a part of thousands of conference calls and virtual meetings during the course of my career. But while the details of many of those conversations …
Continue reading “NORD Commemorates Five Years of FDA Listening Sessions”
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