{"entity":{"id":"eurordis","kind":"institution","name":"EURORDIS-Rare Diseases Europe","aka":["EURORDIS","Rare Diseases Europe"],"tldr":"A Paris-based alliance of rare disease patient organisations, founded in 1997, that speaks for people with rare diseases in Europe, including rare cancers.","summary":"EURORDIS is a non-governmental, patient-driven alliance of patient organisations and individuals in the field of rare diseases, founded in 1997, according to the European Medicines Agency's list of eligible organisations. The same entry says it represents more than 1,000 rare disease organisations in 74 countries and covers more than 4,000 distinct rare diseases. It is not a cancer organisation, but many cancers are rare diseases, and it works on the rules for medicines for rare diseases, European Reference Networks and Rare Disease Day. Its history page records Virginie Bros-Facer stepping down as chief executive, with Virginie Hivert as acting chief executive. Its office is at the former Hôpital Broussais site in Paris.","asOf":"2026-11-04","links":[{"label":"EURORDIS: our history","url":"https://www.eurordis.org/who-we-are/our-history/"},{"label":"EMA: eligible patients' and consumers' organisations","url":"https://www.ema.europa.eu/en/partners-networks/patients-consumers/eligible-patients-consumers-organisations"}],"tags":[],"related":["cancer-patients-europe"],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":[],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"city":"Paris","country":"FR","lat":48.832,"lng":2.317,"institutionType":"consortium","website":"https://www.eurordis.org","programs":["Rare Disease Day","EURORDIS Open Academy","Rare Barometer patient surveys","Advocacy on EU rare disease and pharmaceutical legislation"]},"route":"/institutions/eurordis/","neighbours":{"institution":[{"id":"european-cancer-leagues","kind":"institution","name":"Association of European Cancer Leagues","route":"/institutions/european-cancer-leagues/"},{"id":"cancer-patients-europe","kind":"institution","name":"Cancer Patients Europe","route":"/institutions/cancer-patients-europe/"},{"id":"pseudomyxoma-survivor","kind":"institution","name":"Pseudomyxoma Survivor","route":"/institutions/pseudomyxoma-survivor/"},{"id":"rare-cancers-australia","kind":"institution","name":"Rare Cancers Australia","route":"/institutions/rare-cancers-australia/"}],"term":[{"id":"rare-cancers","kind":"term","name":"Rare cancers","route":"/terms/rare-cancers/"}]}}