National Organization for Rare Disorders (NORD)
Audience and activity
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What National Organization for Rare Disorders (NORD) makes
Topics rare diseases, healthcare, patient advocacy, medical education, clinical research
The National Organization for Rare Disorders® (NORD®) is the leading independent, nonpartisan, nonprofit organization dedicated to improving the health and lives of over 30 million Americans living with more than 10,000 different rare diseases. In partnership with more than 350 disease-specific NORD Member patient organizations and 46 NORD Rare Disease Centers of Excellence across the country, NORD drives progress in rare disease research, care, and policy. NORD began as a small group of patient advocates who formed a coalition to mobilize support to pass the Orphan Drug Act of 1983. For more than 40 years since, NORD has led the way in voicing the needs of the rare disease community — driving supportive state and federal policies, medical education, and patient-powered research — while also providing dedicated patient and family services for those who need them most. Learn more and get involved at rarediseases.org.
Features other people
Recent videos
| Title | Published | Views | Length |
|---|---|---|---|
| NORD Webinar: Rethinking Rare Cancer Research | 2026-09-21 | 176 | 57 min |
| NORD Living Rare, Living Stronger Webinar: Innovative Approaches to Improving Your Rare Disease Care | 2026-09-03 | 120 | 59 min |
| NORD Rare Action Network: Understanding Medical Nutrition and Insurance Coverage Challenges | 2026-08-19 | 107 | 59 min |
| How to Start a NORD Students for Rare Chapter on Your Campus | 2026-08-11 | 76 | 51 min |
| Understanding Desmoid Tumors: Causes, Symptoms, and Treatment | 2026-08-06 | 308 | 7 min |
| NORD Living Rare, Living Stronger Webinar: Overcoming Insurance Barriers | 2026-08-05 | 177 | 59 min |
| Understanding Polycythemia Vera (PV): Causes, Symptoms, and Treatment | 2026-08-03 | 990 | 5 min |
| Participating in Clinical Research: What Patients and families Need to Know | 2026-07-22 | 61 | 65 min |
| Bayesian and Adaptive Trial Designs for Ultra-Rare Populations - NORD Scientific Symposium | 2026-06-08 | 38 | 2 min |
| Registries and Real World Data as Development Platforms - NORD Scientific Symposium | 2026-06-08 | 30 | 2 min |
Contact National Organization for Rare Disorders (NORD)
Email none found in the channel description
YouTube youtube.com/@raredisorders
Contacts come only from what the channel publishes — its description and linked website.
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