Understand what's next for #GeneTherapy and #CellTherapy technology, regulation, and investment. Attend this session co-hosted by the American Society of Gene & Cell Therapy next week, virtually or in D.C.! Register: https://nordsummit.org/
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 41,197 followers
Alone we are rare. Together we are strong.®
About us
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them. NORD, along with its 350+ patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient support services. NORD serves all stakeholders in the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, medical students, and companies developing orphan products. NORD also works closely with many government agencies, most notably the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). All NORD programs are focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases. NORD is the official U.S. sponsor of Rare Disease Day, an international observance day held on the last day of February each year. Its goals are to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. To learn more, visit rarediseases.org/rare-disease-day. To learn more, please visit the NORD website at www.rarediseases.org. You can also follow NORD on X at @RareDiseases.
- Website
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http://www.rarediseases.org
External link for National Organization for Rare Disorders
- Industry
- Non-profit Organizations
- Company size
- 51-200 employees
- Headquarters
- Danbury, CT
- Type
- Nonprofit
- Founded
- 1983
- Specialties
- rare diseases, patient assistance, patient support, rare disease information, advocacy, information for medical professionals, research, online communities, and orphan diseases
Locations
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Primary
Get directions
55 Kenosia Avenue
Danbury, CT 06810, US
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1779 Massachusetts Avenue
Suite 500
Washington, DC 20036, US
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1900 Crown Colony Drive, 4th floor
Quincy, MA 02169, US
Employees at National Organization for Rare Disorders
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Lynn Crisci
Resilience Speaker / Boston Marathon Bombing Survivor / Author / Actress / Patient Advocate / Consultant / Clinical Trials / Rare Disease / Migraine…
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Ramon L.
Senior Software Engineer
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Sarah Krüg
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Thomas Bartlett
Speaker - Chief Patient Officer Summit 2026, DHAI 2026 Patients and AI, WODC 2025 AI impact on Patients/Myasthenia Gravis Patient Advocate/Myasthenia…
Updates
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NORD’s free course for #RareDisease families, "From Records to Research," explains how #HealthData is used to advance research—no technical background required. Available in English and Spanish. Take a look: https://lnkd.in/em9yyBVQ #RareDiseases #EHR #PatientEducation #MedicalResearch #MedicalEducation
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Transitioning from pediatric to adult care can be extra challenging for #RareDisease patients who struggle to find providers with knowledge of their conditions. Through our #IAMRARE registry platform, NORD helps researchers, policymakers, and patient advocacy groups collect patient-reported evidence about these challenges to continuity of care, which can be used to guide better policies and care models. This is also a goal of NORD's first-of-its-kind, longitudinal #LivingRareStudy. From pioneering research to transforming care through the NORD Rare Disease Centers of Excellence network, read more about how #NORD and others are addressing gaps in #ContinuityOfCare for rare patients in this Orphanet article: https://lnkd.in/e7jfG2V6 Learn more about both at iamrare.org and at livingrarestudy.org, respectively, and see how you can get involved.
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Join The Progeria Research Foundation October 29-31, 2025 in Cambridge, Mass. for their 12th Annual International Scientific Workshop - Coming of Age: Progeria Research Reaching for the Cure! More than 100 #progeria researchers, providers, patients, and families from around the world will gather for several days of informative programming and collaboration. You will leave inspired and energized! Find out more and RSVP: https://lnkd.in/eVgFsHaC Supported by the National Institute on Aging (NIA) and Associazione Italiana Progeria Sammy Basso APS.
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The #NORDSummit features an entire hall of cutting-edge research on #RareDisease care, patient engagement, and policy, with the top posters presented live on stage. Virtual attendees can watch the presentations, explore all research in the virtual poster hall, and connect one-on-one with presenters through the conference app! Learn more and consider registering today: https://lnkd.in/eA-QhApb
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At our Rare Action event in #SouthCarolina, the #SC Rare Disease Advisory Council shared their annual report—the first time an #RDAC has gotten to report on their activities directly to the community! We discussed the latest #NORD State Report Card, spotlighting where advocacy can drive the greatest change, and shared practical tools advocates can use to share their stories with legislators and influence policy. As more #HealthPolicy decisions shift to the state level, this is how we help #RareDisease communities build power, close gaps, and make their voices heard. Want NORD to bring Rare Action on the Road to your state? Reach out to action@rarediseases.org to start the conversation.
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Join live for the 2025 #NORDSummit to learn from leaders shaping the future of #RareDisease care. Connect from anywhere to be part of the conversation, including 1-on-1 networking! Reserve your Virtual Pass: nordsummit.org #HealthcareLeadership #Biotech #Pharma #ExecutiveInsights #PatientAdvocacy
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Get ready for next month's #TurkeyTrot! 🏃♀️🦃 Prepare for the virtual race by googling a turkey trot near you or planning a run/walk/roll at your favorite route. Order your #RunningForRare shirt by Oct. 24! Register here: https://lnkd.in/epigt_s5 #Running #CharityRun #Marathon #5K #Runner #RareDisease #RareDiseases #Thanksgiving #RoadRace #CharityRace
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Missed the #NORD Rare Disease Scientific Symposium? All session recordings are now available! Learn from the best minds in #RareDisease science. Access starts at $25 for nonprofits, researchers & clinicians. Watch: https://lnkd.in/epDJuCYZ
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📢 Calling all rare disease advocates in #Indiana and #Kentucky! 💙 #NORD is hosting an in-person grassroots advocacy workshop on Saturday, Oct. 25, from 10 a.m. to 2 p.m. The event will be held at the University of Louisville’s Founders Union Building. If you cannot join us in-person, there is a virtual option available. Whether you're attending in-person or virtually, please register below. Join us and learn how to effectively advocate and share your #RareDisease story with legislators and their staff. We also want to hear from YOU during an open discussion about the most pressing needs and priorities in your state. Sign up today! https://lnkd.in/e59Yxb_8 #RareDiseases #KY #IN #Louisville #Rare
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