# EURORDIS-Rare Diseases Europe

Source: https://onco.cc/institutions/eurordis/  
OnCo record `eurordis` (Institution). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Fields

- Kind: Institution
- Last checked: 2026-11-04
- Also known as: EURORDIS; Rare Diseases Europe
- City: Paris, FR
- Type: consortium
- Website: https://www.eurordis.org

## Sources

- EURORDIS: our history: https://www.eurordis.org/who-we-are/our-history/
- EMA: eligible patients' and consumers' organisations: https://www.ema.europa.eu/en/partners-networks/patients-consumers/eligible-patients-consumers-organisations

## Connected records

- institutions: [Association of European Cancer Leagues](https://onco.cc/institutions/european-cancer-leagues/), [Cancer Patients Europe](https://onco.cc/institutions/cancer-patients-europe/), [Pseudomyxoma Survivor](https://onco.cc/institutions/pseudomyxoma-survivor/), [Rare Cancers Australia](https://onco.cc/institutions/rare-cancers-australia/)
- terms: [Rare cancers](https://onco.cc/terms/rare-cancers/)

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JSON: https://onco.cc/api/v1/entities/eurordis.json