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
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 32,771 followers
Alone we are rare. Together we are strong.®
Über uns
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
- Industrie
- Non-profit Organizations
- Größe des Unternehmens
- 51-200 Mitarbeiter
- Hauptsitz
- Danbury, CT
- Typ
- Nonprofit
- Gegründet
- 1983
- Spezialitäten
- rare diseases, patient assistance, patient support, rare disease information, advocacy, information for medical professionals, research, online communities, and orphan diseases
Standorte
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Primäre
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…
Aktualisierungen
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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
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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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Today is #MSDWorldDay, raising awareness and support for people living with multiple sulfatase deficiency (#MSD) worldwide! Read a guest blog by NORD Member CureMSD about the day and how YOU can get involved: https://bit.ly/3zMBxsw #MultipleSulfataseDeficiency
Guest Blog: One Mother's Mission Turns Into a Global Movement for a Cure for MSD
rarediseases.org
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NORD is honored to be chosen as U.S. Charity of the Year by The Access Group! #RareDiseases affect 1 in 10 Americans. We can't wait to work with the team at TAG over the next year to support these individuals and families through their generous donations, as well as by raising awareness together and volunteering in the #RareDisease community. Thank you, TAG staff!
We are excited to share that National Organization for Rare Disorders is our USA charity of the year for financial year 2024/25, along with other 8 charities globally. NORD is a charity in the US that builds a community to create lasting impact by improving the health and wellbeing of people with rare diseases by driving advances in care, research, and policy. Learn more about our chosen charities: https://ow.ly/Vg7o50SK5hC #WeAreAccess #Charity #GivingBack