Leukodystrophy - Symptoms, Causes, Treatment | NORD
Leukodystrophy - Symptoms, Causes, Treatment | NORD
Nov 20, 2023
rarediseases.org
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
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NORD’s Rare Disease Centers of Excellence network just got bigge…
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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
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Building patient registries is essential for advancing rare disea…
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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
The #RareDiseaseDay 2026 official video is here! 💗💚💙💜🦓 We're excited to se…
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In rare disease research, data drives progress. But who owns the data and controls its use matters just as much. For the SCN2A Related Autism & Epilepsy: The FamilieSCN2A Foundation, data ownership was essential. They partnered with NORD’s IAMRARE® platform, which keeps patients and advocacy groups in control while producing high-quality, research-ready data. Hear how the FamilieSCN2A Foundation is advancing autism and epilepsy research on their terms. Learn more at iamrare.org. | National Organ
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In rare disease research, data drives progress. But who owns the data …
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What happens *before* the main stage? Today, our rare disease community came together for a series of powerful meetings ahead of the 2025 NORD Breakthrough Summit tomorrow — and the energy is already incredible. Patient registries, student leaders, our Member organizations (shown here), and Rare Disease Advisory Council leaders spent the day diving deep into real issues, sharing insights, and tackling shared challenges, together. This is where the real work begins. Where connections are created.
What happens *before* the main stage? Today, our rare disease co…
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We saw how much you loved our Swifties Rare Warriors Unite posts—and we’re keeping the spirit alive! 🧡 Here are a few of our amazing community members who remind us what Life of a Rare Disease Advocate means: Chantal – Caring full-time for her son Felix-Carl and showing the strength and advocacy that defines rare parenthood. Sarah – Turning years of misdiagnosis with Addison’s Disease into a mission to empower and educate others. Laura – Sharing her journey with Carpenter Syndrome to bring awar
We saw how much you loved our Swifties Rare Warriors Unite posts…
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Did you know NORD’s #IAMRARE® research platform supports 45 rar…
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Exciting news! Registration is now open for the 2nd Annual NORD Ra…
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Research Grant Program | NORD
Jan 10, 2023
rarediseases.org
3K views · 71 reactions | Today, our rare disease community received...
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National Organization for Rare Disorders | LinkedIn
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Get Involved with the Rare Disease Community | NORD
Mar 16, 2022
rarediseases.org
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