Are you or a loved one living with #IgANephropathy and struggling to pay for medical visits, prescriptions, labs, devices, or therapeutic care? NORD's #IGAN Patient Assistance Program can help. Apply online: https://bit.ly/4dorHvC or email IgANephropathy@rarediseases.org
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 32,787 followers
Alone we are rare. Together we are strong.®
About us
The National Organization for Rare Disorders, 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 330 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 sponsor of Rare Disease Day in the US, an observance day held on the last day of February each year worldwide. 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 rarediseaseday.us. To learn more please visit the NORD website at www.rarediseases.org. You can also follow NORD on Twitter 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
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 Julian
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 - Myasthenia Gravis Patient Advocate. Myasthenia Gravis Patient Digital Technology Advisor/MGFA National Patient Ambassador - Research and MG…
Updates
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Good news in #Tennessee: New laws allow #Medicaid to cover #GeneticTesting expenses for kids with rare diseases AND mandate that any new diseases added to the national Recommended Uniform Screening Panel (#RUSP) be required in all newborn screenings within three years. https://bit.ly/3WqOlMP #TN #RareDiseases #NewbornScreening #TennCare
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10 years ago today, the #IceBucketChallenge swept America. It was the most visible national fundraiser for a rare disease, #ALS, demonstrating both the power of patients like The ALS Association to generate change and the deep and present need for philanthropy to support #RareDisease research. That funding is still needed, now more than ever. #IceBucket10
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Dr. Annette Bakker, CEO of the Children's Tumor Foundation, explains the importance of Rare Pediatric Disease PRVs for childhood #cancer research, specifically #neurofibromatosis. This program MUST be reauthorized by Congress by September 30, 2024 or it will expire. Take action now if you haven't already: https://lnkd.in/ettvJA2p #EndNF #NF1 #NF2 #ChildhoodCancer #PediatricCancer #Pediatric #Tumors #PriorityReviewVouchers #PRV
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In this short video, Dr. Leslie Gordon, Co-Founder and Medical Director of The Progeria Research Foundation, explains the vital importance of Rare Pediatric Disease PRVs for #progeria and other #RareDiseases. If you have not taken action on this issue, do so here: https://lnkd.in/ettvJA2p
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Gina Glass, Executive Director of Dreamsickle Kids Foundation,Inc and mom to a child with #SickleCellDisease, says the Rare Pediatric Disease Priority Review Voucher (PRV) Program is vital for researching treatments for #SickleCell and other rare pediatric diseases. Congress must reauthorize this program by September 30 or it will expire. Learn more and take action: https://bit.ly/4bey1VI
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The Uplifting Athletes 2025 Young Investigator Grants are now open and accepting applications until Sept. 23! #RareDisease patient advocacy groups interested in collaborative foundational research, apply here: https://lnkd.in/da__hKtP
Young Investigator Draft - Uplifting Athletes
https://www.upliftingathletes.org
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Physicians, check out the new educational resource from the National #Adrenal Diseases Foundation to treat patients with #AdrenalInsufficiency, including info on sick day and stress dosing, emergency prescriptions, and diagnostic tests: https://lnkd.in/duZC3Fdy
For Physicians
nadf.us
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The next phase of NORD's education series for patient advocates on #RareDisease #DrugDevelopment is now live in English and Spanish! Learn about the #FDA review process, labeling, expanded access, and drug repurposing: https://bit.ly/3WtkNOz
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Introducing new NORD Member, HETEROTAXY CONNECTION! Their mission: to create a world where individuals and families affected by #heterotaxy syndrome get support, education and empowerment to live their best lives. https://lnkd.in/eHEbWAFX
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