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European Organisation for Rare Diseases

European Organisation for Rare Diseases
Established1997
President
Yann Le Cam

EURORDIS-Rare Diseases Europe (EURORDIS) is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases that promotes research on rare diseases and commercial development of orphan drugs. EURORDIS is dedicated to improving the quality of life of all people living with rare diseases in Europe. It was founded in 1997; it is supported by its members and by the French Muscular Dystrophy Association (AFM), the European Commission, corporate foundations and the health industry.[1]

There are an estimated 20–30 million people living with rare diseases in Europe alone,[2] and an estimated 6,000 rare diseases. EURORDIS represents more than 960 rare disease organisations in 63 countries (of which 26 are EU member states), covering more than 2,000 rare diseases.[1]

EURORDIS is a development of the patient self-advocacy movement, itself widely attributed to AIDS activism.[3]

EURORDIS was the founding partner of Rare Disease Day in 2008 and remains its lead coordinator.[4] To foster awareness for the Rare Disease Day, EURORDIS organises the EURORDIS Black Pearl Awards each year.[5]

National organisations with a similar focus include National Organization for Rare Disorders (NORD) in the United States, Canadian Organization for Rare Disorders (CORD) in Canada,[6] Organization for Rare Diseases India (ORDI) in India, Allianz Chronischer Seltener Erkrankungen [de] (ACHSE) in Germany, and Federación Española de Enfermedades Raras (FEDER) in Spain.[2]

See also

References

  1. ^ a b "EURORDIS in brief". www.eurordis.org.
  2. ^ a b Nogales Espert A (2004). "[Rare diseases: a new chapter in medicine]". An R Acad Nac Med (Madr) (in Spanish). 121 (1): 139–51, discussion 151–5. PMID 15553406.
  3. ^ Houyez F (2004). "Active involvement of patients in drug research, evaluation, and commercialization: European perspective". J Ambul Care Manage. 27 (2): 139–45. doi:10.1097/00004479-200404000-00010. PMID 15069992. S2CID 75497714.
  4. ^ "Rare Disease Day 2018 - 28 Feb". Rare Disease Day - 28 Feb 2018.
  5. ^ "EURORDIS Black Pearl Awards". EURORDIS Black Pearl Awards - 05 March 2024.
  6. ^ "Canadian Organization for Rare Disorders". www.raredisorders.ca.
Quelle: https://en.wikipedia.org/wiki/European_Organization_for_Rare_Diseases