European Organization for Rare Diseases
Encyclopedia
The European Organization 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
s and commercial development of orphan drug
s. EURORDIS is a 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.
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 461 rare disease organizations in 45 different countries (of which 24 are EU Member States), covering more than 1,200 rare diseases.
EURORDIS is a development of the patient self-advocacy movement, itself widely attributed to AIDS activism.
EURORDIS was the founding partner and lead coordinator for Rare Disease Day
in 2008.
National organizations with a similar focus include National Organization for Rare Disorders
(NORD) in the United States
, Canadian Organization for Rare Disorders
(CORD) in Canada
, Allianz Chronischer Seltener Erkrankungen (ACHSE) in Germany, and Federación Española de Enfermedades Raras (FEDER) in Spain
.
Rare disease
A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear...
s and commercial development of orphan drug
Orphan drug
An orphan drug is a pharmaceutical agent that has been developed specifically to treat a rare medical condition, the condition itself being referred to as an orphan disease...
s. EURORDIS is a 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.
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 461 rare disease organizations in 45 different countries (of which 24 are EU Member States), covering more than 1,200 rare diseases.
EURORDIS is a development of the patient self-advocacy movement, itself widely attributed to AIDS activism.
EURORDIS was the founding partner and lead coordinator for Rare Disease Day
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...
in 2008.
National organizations with a similar focus include National Organization for Rare Disorders
National Organization for Rare Disorders
The National Organization for Rare Disorders is an American non-profit organization aiming to provide support individuals with rare diseases by advocating and funding research, education, and networking among service providers...
(NORD) in the United States
United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
, Canadian Organization for Rare Disorders
Canadian Organization for Rare Disorders
The Canadian Organization for Rare Disorders is a Canadian registered charity that is a network of organizations who represent people affected by rare diseases...
(CORD) in Canada
Canada
Canada is a North American country consisting of ten provinces and three territories. Located in the northern part of the continent, it extends from the Atlantic Ocean in the east to the Pacific Ocean in the west, and northward into the Arctic Ocean...
, Allianz Chronischer Seltener Erkrankungen (ACHSE) in Germany, and Federación Española de Enfermedades Raras (FEDER) in Spain
Spain
Spain , officially the Kingdom of Spain languages]] under the European Charter for Regional or Minority Languages. In each of these, Spain's official name is as follows:;;;;;;), is a country and member state of the European Union located in southwestern Europe on the Iberian Peninsula...
.