European Organization for Rare Diseases
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The European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, that promotes research on
rare disease A rare disease is any disease that affects a small percentage of the population. In some parts of the world, an orphan disease is a rare disease whose rarity means there is a lack of a market large enough to gain support and resources for discov ...
s 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 The European Commission (EC) is the executive of the European Union (EU). It operates as a cabinet government, with 27 members of the Commission (informally known as "Commissioners") headed by a President. It includes an administrative body ...
, corporate foundations and the health industry. There are an estimated 20–30 million people living with rare diseases in Europe alone, and an estimated 6,000 rare diseases. EURORDIS represents more than 960 rare disease organisations in 63 different countries (of which 26 are EU Member States), covering more than 2,000 rare diseases. EURORDIS is a development of the patient self-advocacy movement, itself widely attributed to
AIDS activism Social and political activism to raise awareness about HIV/AIDS, as well as to raise funds for effective treatment and care of people with AIDS (PWAs), has taken place in multiple nations across the world since the 1980s. As a disease that bega ...
. EURORDIS was the founding partner of
Rare Disease Day Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The European Organisation ...
in 2008 and remains its lead coordinator. National organisations with a similar focus include
National Organization for Rare Disorders 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. It wa ...
(NORD) in the
United States The United States of America (U.S.A. or USA), commonly known as the United States (U.S. or US) or America, is a country primarily located in North America. It consists of 50 states, a federal district, five major unincorporated territori ...
, Canadian Organization for Rare Disorders (CORD) in
Canada Canada is a country in North America. Its ten provinces and three territories extend from the Atlantic Ocean to the Pacific Ocean and northward into the Arctic Ocean, covering over , making it the world's second-largest country by tot ...
, Organization for rare diseases India (ORDI) in
India India, officially the Republic of India (Hindi: ), is a country in South Asia. It is the seventh-largest country by area, the second-most populous country, and the most populous democracy in the world. Bounded by the Indian Ocean on the so ...
, Allianz Chronischer Seltener Erkrankungen (ACHSE) in Germany, and Federación Española de Enfermedades Raras (FEDER) in
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.


See also

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Orphanet Orphanet is a knowledge base dedicated to rare diseases as well as corresponding diagnosis, orphan drugs, clinical trials and expert networks The website is managed by a network of academic establishments from 40 countries, led by Inserm. It c ...


References

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External links


EURORDIS official website

EURORDIS and NORD project to develop Online Patient Communities

Global website for Rare Disease Day information and activities
Medical and health organizations based in France European medical and health organizations Patients' organizations Biobank organizations International organizations based in France