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 "Montana Establishes Rare Disease Advisory Council to Support Residents Living with Rare Conditions"...
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NORD’s advocacy helps Montana become 32nd state to create a dedicated council HELENA, MONT., May 14, 2025 — The National Organization for Rare Disorders (NORD®) celebrates Montana Gov. Greg Gianforte’s signing …
Read moreNew State Council Will Help Shape Health Policies for Arizonans Living with Rare Diseases PHOENIX, May 13, 2025 — The National Organization for Rare Disorders (NORD®) celebrates a significant milestone …
Continue reading “Arizona Becomes the 31st State With a Rare Disease Advisory Council”
Read moreBy Alicia Truelove, MSN, RN, CV-BC, NPD-BC International Nurses Day, May 12, is a time to honor and celebrate the heart of healthcare: nurses. As a nurse of over 14 …
Read moreBy Christine McGarvey, NORD Rare Action Network Ambassador for Pennsylvania I have been on a long odyssey for over a decade in search of an ever-elusive diagnosis. In addition, I …
Continue reading “#UndiagnosedLife: An Ode to My Wingman on My Diagnostic Odyssey”
Read moreCongress is currently considering potentially sweeping funding cuts to Medicaid, a program that provides life-saving health care coverage and services to those who need it most. What is at stake …
Continue reading “Rare Faces of Medicaid: What’s at Stake for the Rare Community?”
Read moreIn honor of Undiagnosed Day on April 29, the National Organization for Rare Disorders (NORD) celebrates the health care providers of today and tomorrow who are working to shorten the …
Continue reading “Undiagnosed: Medical Students Work to Change Rare Disease Curriculum”
Read more“Having someone say, ‘This is your diagnosis. You are not crazy. It’s not in your head,’ would provide such relief, even if there is no cure.” ~ M, a mother …
Continue reading “Undiagnosed: A Mother and Son’s Journey”
Read moreChris Anselmo is a writer, coach, and advocate who is passionate about resilience and personal growth. Through his newsletter “Hello, Adversity,” he explores mindset shifts, overcoming challenges, and the realities …
Continue reading “Navigating Adversity Through Writing, an Interview with Chris Anselmo”
Read moreMila Makovec was only three years old when she began experiencing frequent seizures and losing her vision. For any parent, having a child with health problems is a scary scenario. …
Continue reading “Personalized medicine helps treat toddler with rare disease”
Read moreThe FDA approval of the first treatment for Friedreich’s Ataxia (FA) on Rare Disease Day in 2023 marked a significant milestone for the estimated 5,000 people in the U.S. and …
Continue reading “Guest Blog: The Power of Patient Advocacy in Drug Development”
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