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National Organization for Rare Disorders

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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,[2] along with individuals with rare diseases leaders of rare disease support groups,[1][2] and it is a 501(c)3 tax exempt organization.[1]

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.[3] They succeeded in getting the United States Congress to pass the Orphan Drug Act (ODA) in early 1983.[1][3][4][5]

The initial coalition was led by Abbey Meyers, whose son had Tourette syndrome.[6] Tourette syndrome is a rather common neurological disorder that was estimated by the National Institutes of Health (NIH) to affect only 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. 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;[3] the president is now Peter Saltonstall.[2]

Since its founding in 1983 NORD continued to grow with the help of federal grants[3] and donations.

Scope

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[3]); spreading information about rare diseases; and helping individuals with rare diseases afford medication and treatment.[1][7] 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).[4][8][9] NORD has also helped other countries to develop orphan drug legislation in their nations. Thus rare diseases and orphan drugs has become a worldwide effort.

See also

References

  1. ^ a b c d e "About NORD". National Organization of Rare Diseases. 30 July 2008. Archived from the original on 17 February 2009. Retrieved 14 February 2009. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  2. ^ a b c "The National Organization for Rare Disorders (NORD) Names Peter Saltonstall New President". Reuters. 5 May 2008. Retrieved 14 February 2009.
  3. ^ 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. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  4. ^ a b "Millions Around World to Observe Rare Disease Day". PR Newswire. 13 February 2009. Retrieved 14 February 2009.[permanent dead link‍]
  5. ^ Henkel, John (1999). "Orphan Drug Law Matures into Medical Mainstay". FDA Consumer. U.S. Food and Drug Administration. Retrieved 14 February 2009.
  6. ^ Graff, Joyce (2008). "Abbey Meyers and the National Organization for Rare Disorders". Powerful Patient. VHL Family Alliance. Retrieved 14 February 2009.
  7. ^ Donohue, Paul G. (2 February 2009). "'Rare' diseases aren't rare to those who suffer them". The Standard-Times. Retrieved 14 February 2009.
  8. ^ "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. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  9. ^ "February 28th is Rare Disease Day". PharmiWeb.com. 12 February 2009. Retrieved 14 February 2009.

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