NORD’s Rare Disease Centers of Excellence network just got bigger — we’ve added seven new Centers across the country! Details here: https://bit.ly/4oqQeFv That means more families facing rare diseases can find: 🔹 Expert, coordinated care 🔹 Faster, clearer diagnoses 🔹 Better access to research studies and new treatments With 46 centers in 28 states and D.C., we’re working hard to make sure that, no matter where you live, you can connect with specialists who understand your rare condition. Join

Building patient registries is essential for advancing rare disease research, but it can be challenging for organizations with limited resources. NORD's IAMRARE® platform helps by providing guidance, technical support, and long-term partnership every step of the way. This week, we’re sharing video stories from patient advocacy leaders we work with. First up, The Coalition to Cure Calpain 3 talks about how we helped launch and grow their registry! Learn more about IAMRARE at iamrare.org. | Nation

The #RareDiseaseDay 2026 official video is here! 💗💚💙💜🦓 We're excited to see Micah of Transplant Teenz featured in it as our North American representative. Learn how to join this global movement at rarediseaseday.us. Video produced by EURORDIS-Rare Diseases Europe, the originators of Rare Disease Day and the leading advocates for people with rare disorders in Europe, and brought to you by the National Organization for Rare Disorders (NORD), the official U.S. sponsor of Rare Disease Day, advo

NORD Chief Strategy & Operations Officer Kelly Esperias has an important message for our community: ✅ Yes, the 2025 NORD Breakthrough Summit is ON — despite the government shutdown. For 40 years, NORD has kept moving forward through uncertainty, just like the rare disease community we serve. The NORD Breakthrough Summit is no exception. Don’t miss this powerful event in Washington, D.C., Oct 19–21. There's just one week left to register to attend in-person or virtually! Secure your spot now: htt

Exciting news! Registration is now open for the 2nd Annual NORD Rare Disease Scientific Symposium, April 14-15 in Arlington, Va. Sign up now: https://nordscience.org/ Connect with researchers, clinicians, and rare disease innovators, and learn the latest on clinical trial design, new technologies, and FDA regulations. | National Organization for Rare Disorders, Inc. (NORD)

Wisconsin rare disease community: We need your voice today! Lani of the Wisconsin Rare Disease Alliance, a rare mom, shares why this matters. If you’re a Wisconsin resident, contact your state senators and ask them to support and co-sponsor SB 203. Every call and email counts! #RareDiseases #LivingRareWI | National Organization for Rare Disorders, Inc. (NORD)