Were you also stunned by armless #Paralympic archer Sheetal Devi's perfect bullseye over the weekend? This 17-year-old athlete from India is living with the rare genetic condition #phocomelia. Read more: https://lnkd.in/dfkj7JWJ #Paralympics #SheetalDevi #Archery
National Organization for Rare Disorders
Non-profit Organizations
Danbury, CT 33,200 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 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 - Myasthenia Gravis Patient Advocate. Myasthenia Gravis Patient Digital Technology Advisor/MGFA National Patient Ambassador - Research and MG…
Updates
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Looking for a way to use your #GrantWriting skills to help a small #RareDisease nonprofit? Contact the #KdVS Foundation today! They are looking for a volunteer grants officer. Learn more and apply here: https://lnkd.in/drkpY8Vd #KoolenDeVriesSyndrome #KoolenDeVries
Volunteering - Koolen-de Vries Syndrome Foundation | KDVS
https://kdvsfoundation.org
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If you are living with Maroteaux-Lamy Syndrome, also known as MPS VI, and need financial assistance to pay for health care costs, NORD and the National MPS Society can help. Apply for assistance: https://bit.ly/4dNQd9r or email [email protected] #MPSVI #MPS #Mucopolysaccharidosis #MaroteauxLamy #MaroteauxLamySyndrome
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The cost of #healthcare is heavier on #RareDisease patients, particularly those in marginalized groups. This challenge requires all of us to fix it: providers, insurers, legislators, advocates. Read more: https://lnkd.in/eqV4bwdb This first-of-its-kind survey was conducted by NORD and the Rare Disease Diversity Coalition.
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Early bird pricing for the 2024 #NORDSummit closes September 9! This is your last chance to save $300 per ticket to this must-attend event all about #RareDisease research and orphan treatment development. Register today: https://nordsummit.org/
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Register for the Wilson Disease Association Annual Conference in Charlotte, NC October 4-6! Meet others in the #WilsonDisease community + learn about cutting edge research and how to live well from top experts: https://bit.ly/3yHYlJW #LiverDisease #Liver #Hepatology #Ophthalmology #HepatolenticularDegeneration #NorthCarolina
2024 Annual Conference
https://wilsondisease.org
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Physicians, listen to this "Ask the Expert" podcast episode featuring Dr. Shuvro Roy of UW Medicine, a NORD #RareDisease Center of Excellence, discussing "The Role of Physicians and Patients in Legislative Advocacy." https://srna.ngo/leg-adv
The Role of Physicians and Patients in Legislative Advocacy
https://wearesrna.org
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Hey #Oklahoma Rare Action Network members and interested volunteers! Join NORD in-person at United Way of Central Oklahoma on Friday, Sept. 27 from 9am-1pm for a #RareDisease advocacy workshop! Register here: https://bit.ly/4fRXwPA NORD staff will provide: • Education on Rare Disease Advisory Councils (#RDACs) • A workshop on how to advocate with legislators and their staff • An overview of #NORD and how you can participate in raising awareness for the rare disease community! Refreshments will be provided in the morning, and lunch will be provided in the afternoon. We hope you'll join us! #OklahomaCity #OKC #Tulsa #DelCity #MidwestCity #NormanOklahoma
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An experimental #GeneTherapy improved the health of one of this mom's children with spastic paraplegia 50 (#SPG50). But her other child with SPG50 has not received the therapy, and the clinical trial has run out of funding. This is why investment in #RareDisease research is so important. Our economy needs to work for rare disease families - every company, every city, every state, and every politician needs to take up this cause and do their part to bring hope and treatments to all. Read more: https://lnkd.in/eTq7i8Ju #SpasticParaplegia50 #SpasticParaplegia #Paraplegia #ClinicalTrial #ClinicalTrials #Biotechnology
Mother frantic to save clinical trial that could cure her daughter: ‘The treatment is sitting in a fridge'
foxnews.com
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#Arkansas Rare Action Network members are invited to join us in-person at the State Capitol on Saturday, September 28 from 10:30 a.m. to 2:00 p.m. for a #RareDisease advocacy workshop! New volunteers are welcome. Register here: https://bit.ly/4dMv9jF
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