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National Organization for Rare Disorders

March 06, 2023

For other uses, see Nord (disambiguation).

The National Organization for Rare Disorders (NORD) is an American non-profit organization aiming to provide support for individuals with rare diseases by advocating and funding research, education, and networking among service providers.[1] It was founded in 1983 by Abbey Meyers, along with individuals and rare diseases leaders of rare disease support groups, and it is a 501(c)3 tax exempt organization.[1][2][3]

National Organization for Rare Disorders
Founded1983
Legal status501(c)(3) nonprofit organization
Servicesprovide support for individuals with rare diseases by advocating and funding research, education, and networking among service providers.
President and CEO
Peter Saltonstall
Websiterarediseases.org

History

The organization grew out of an "informal coalition" of support groups and families called together in the late 1970s to advocate legislation supporting development of orphan drugs, or drugs for treating rare diseases.[4] They succeeded in getting the United States Congress to pass the Orphan Drug Act (ODA) in early 1983.[1][4][5][6]

The initial coalition was led by Abbey Meyers, whose son had Tourette syndrome.[7] Tourette syndrome was estimated by the National Institutes of Health to affect 100,000 people in the United States. Meyers' son was helped by an experimental drug that the manufacturer ceased to develop because they assumed it would not be profitable enough.[3] After passage of the Orphan Drug Act, the coalition founded NORD with Meyers as its president. In 2007 Meyers announced her retirement from the NORD presidency; the president is now Peter L. Saltonstall.[2][4]

Since its founding in 1983, NORD continued to grow with the help of federal grants and donations.[4]

Activities

NORD's operations include funding research on treatment and cures for rare diseases; lobbying for legislation to benefit the rare diseases community (in addition to the Orphan Drug Act, NORD has helped bring about legislation on publicizing clinical trials on the Internet, to give the public and medical professionals warning about projected drug shortages, and on the development of medical devices);[4] spreading information about rare diseases; and helping individuals with rare diseases afford medication and treatment.[1][8] In February 2009, NORD sponsored Rare Disease Day in the United States; this was the first time Rare Disease Day was observed in the United States (it was first observed in Europe in February 2008).[5][9][10] NORD has also helped other countries to develop orphan drug legislation in their nations.

Organization

Corporate Council

NORD maintains a Corporate Council made up of companies in the pharmaceutical, biotechnology and clinical research industries.[11] Members include:

Partnerships

NORD is engaged in partnerships with a number of patient advocacy groups and industry organizations. Partners include:[12][13]

See also

References

  1. ^ a b c d . National Organization of Rare Diseases. 30 July 2008. Archived from the original on 17 February 2009. Retrieved 14 February 2009.
  2. ^ a b "The National Organization for Rare Disorders (NORD) Names Peter Saltonstall New President". Reuters. 5 May 2008. Archived from the original on 4 January 2013. Retrieved 14 February 2009.
  3. ^ a b "Episode 329: Orphan Drugs". 99% Invisible. 99% Invisible. 13 November 2018. Retrieved 18 November 2018.
  4. ^ a b c d e Parisse-Brassens, Jerome (July 2007). . European Organization for Rare Disorders. Archived from the original on 9 October 2007. Retrieved 14 February 2009.
  5. ^ a b "Millions Around World to Observe Rare Disease Day". PR Newswire. 13 February 2009. Retrieved 14 February 2009.[permanent dead link]
  6. ^ Henkel, John (1999). "Orphan Drug Law Matures into Medical Mainstay". FDA Consumer. U.S. Food and Drug Administration. Retrieved 14 February 2009.
  7. ^ Graff, Joyce (2008). "Abbey Meyers and the National Organization for Rare Disorders". Powerful Patient. VHL Family Alliance. Retrieved 14 February 2009.
  8. ^ Donohue, Paul G. (2 February 2009). "'Rare' diseases aren't rare to those who suffer them". The Standard-Times. Retrieved 14 February 2009.
  9. ^ . PR Newswire. 9 February 2009. Archived from the original on 17 June 2009. Retrieved 14 February 2009.
  10. ^ . PharmiWeb.com. 12 February 2009. Archived from the original on 22 February 2014. Retrieved 14 February 2009.
  11. ^ "Current NORD Corporate Council Members". NORD (National Organization for Rare Disorders). from the original on 12 October 2022. Retrieved 12 October 2022.
  12. ^ "National Partnerships: NORD's Partners and Alliances". NORD (National Organization for Rare Disorders). from the original on 12 October 2022. Retrieved 12 October 2022.
  13. ^ "Partnerships". NORD (National Organization for Rare Disorders). from the original on 12 October 2022. Retrieved 12 October 2022.

External links

March 06, 2023
national, organization, rare, disorders, other, uses, nord, disambiguation, nord, american, profit, organization, aiming, provide, support, individuals, with, rare, diseases, advocating, funding, research, education, networking, among, service, providers, foun. For other uses see Nord disambiguation The National Organization for Rare Disorders NORD is an American non profit organization aiming to provide support for individuals with rare diseases by advocating and funding research education and networking among service providers 1 It was founded in 1983 by Abbey Meyers along with individuals and rare diseases leaders of rare disease support groups and it is a 501 c 3 tax exempt organization 1 2 3 National Organization for Rare DisordersFounded1983Legal status501 c 3 nonprofit organizationServicesprovide support for individuals with rare diseases by advocating and funding research education and networking among service providers President and CEOPeter SaltonstallWebsiterarediseases wbr org Contents 1 History 2 Activities 3 Organization 3 1 Corporate Council 3 2 Partnerships 4 See also 5 References 6 External linksHistory EditThe organization grew out of an informal coalition of support groups and families called together in the late 1970s to advocate legislation supporting development of orphan drugs or drugs for treating rare diseases 4 They succeeded in getting the United States Congress to pass the Orphan Drug Act ODA in early 1983 1 4 5 6 The initial coalition was led by Abbey Meyers whose son had Tourette syndrome 7 Tourette syndrome was estimated by the National Institutes of Health to affect 100 000 people in the United States Meyers son was helped by an experimental drug that the manufacturer ceased to develop because they assumed it would not be profitable enough 3 After passage of the Orphan Drug Act the coalition founded NORD with Meyers as its president In 2007 Meyers announced her retirement from the NORD presidency the president is now Peter L Saltonstall 2 4 Since its founding in 1983 NORD continued to grow with the help of federal grants and donations 4 Activities EditNORD s operations include funding research on treatment and cures for rare diseases lobbying for legislation to benefit the rare diseases community in addition to the Orphan Drug Act NORD has helped bring about legislation on publicizing clinical trials on the Internet to give the public and medical professionals warning about projected drug shortages and on the development of medical devices 4 spreading information about rare diseases and helping individuals with rare diseases afford medication and treatment 1 8 In February 2009 NORD sponsored Rare Disease Day in the United States this was the first time Rare Disease Day was observed in the United States it was first observed in Europe in February 2008 5 9 10 NORD has also helped other countries to develop orphan drug legislation in their nations Organization EditCorporate Council Edit NORD maintains a Corporate Council made up of companies in the pharmaceutical biotechnology and clinical research industries 11 Members include AbbVie Acadia Pharmaceuticals Agios Pharmaceuticals Alexion Pharmaceuticals Alnylam Pharmaceuticals Amgen Amicus Therapeutics Arcturus Therapeutics Astellas Pharma Avadel Pharmaceuticals Beam Therapeutics BioCryst Pharmaceuticals Biogen BioMarin Pharmaceutical Biotechnology Innovation Organization Bluebird bio Boehringer Ingelheim Bristol Myers Squibb Camurus Catalyst Pharmaceuticals CRISPR Therapeutics CSL Behring Cytokinetics Daiichi Sankyo Editas Medicine Eli Lilly and Company Foundation Medicine Galderma Genentech GlaxoSmithKline Horizon Therapeutics Icon Illumina Inc Incyte Ionis Pharmaceuticals Ipsen Janssen Jazz Pharmaceuticals Kyowa Kirin Mallinckrodt Medidata Solutions Merck amp Co Moderna Neurocrine Biosciences Novartis Otsuka Pharmaceutical Parexel Pfizer Pharmaceutical Research and Manufacturers of America PTC Therapeutics Regeneron Pharmaceuticals Sangamo Therapeutics Sanofi Santen Pharmaceutical Sarepta Therapeutics Sobi Spark Therapeutics Syneos Health Synlogic Takeda Oncology UCB Vertex Pharmaceuticals Zealand Pharma Partnerships Edit NORD is engaged in partnerships with a number of patient advocacy groups and industry organizations Partners include 12 13 Alliance for a Stronger FDA Alliance for Healthcare Reform Coalition for Accessible Treatments CAT EURORDIS Rare Diseases Europe National Health Council Research America State Access to Innovative Medicines Coalition SAIM United States Pharmacopeia USP See also EditRare Diseases Act of 2002References Edit a b c d About NORD National Organization of Rare Diseases 30 July 2008 Archived from the original on 17 February 2009 Retrieved 14 February 2009 a b The National Organization for Rare Disorders NORD Names Peter Saltonstall New President Reuters 5 May 2008 Archived from the original on 4 January 2013 Retrieved 14 February 2009 a b Episode 329 Orphan Drugs 99 Invisible 99 Invisible 13 November 2018 Retrieved 18 November 2018 a b c d e Parisse Brassens Jerome July 2007 Abbey Meyers President of NORD announces her retirement European Organization for Rare Disorders Archived from the original on 9 October 2007 Retrieved 14 February 2009 a b Millions Around World to Observe Rare Disease Day PR Newswire 13 February 2009 Retrieved 14 February 2009 permanent dead link Henkel John 1999 Orphan Drug Law Matures into Medical Mainstay FDA Consumer U S Food and Drug Administration Retrieved 14 February 2009 Graff Joyce 2008 Abbey Meyers and the National Organization for Rare Disorders Powerful Patient VHL Family Alliance Retrieved 14 February 2009 Donohue Paul G 2 February 2009 Rare diseases aren t rare to those who suffer them The Standard Times Retrieved 14 February 2009 National Organization for Rare Disorders To Partner With Discovery Health and MYSTERY DIAGNOSIS for Rare Disease Day 2009 PR Newswire 9 February 2009 Archived from the original on 17 June 2009 Retrieved 14 February 2009 February 28th is Rare Disease Day PharmiWeb com 12 February 2009 Archived from the original on 22 February 2014 Retrieved 14 February 2009 Current NORD Corporate Council Members NORD National Organization for Rare Disorders Archived from the original on 12 October 2022 Retrieved 12 October 2022 National Partnerships NORD s Partners and Alliances NORD National Organization for Rare Disorders Archived from the original on 12 October 2022 Retrieved 12 October 2022 Partnerships NORD National Organization for Rare Disorders Archived from the original on 12 October 2022 Retrieved 12 October 2022 External links EditOfficial site NORD profile on GuideStar Retrieved from https en wikipedia org w index php title National Organization for Rare Disorders amp oldid 1132805396, wikipedia, wiki, book, books, library,

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