EURORDIS – Rare Diseases Europe

EURORDIS is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. By connecting patients, families, and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and patient services. Our mission is to work across borders and diseases to improve the lives of all persons living with a rare disease. This is done through the three-pronged strategy of: advocate, empower and partner. 

The contribution of EURORDIS has been key to the adoption of important rare disease and orphan medicine legislations at the European level, including the EU Regulation on Orphan Medicinal Products, the EU Regulation on Paediatric Drugs, the EU Regulation on Advanced Therapies, the Council Recommendation on a European action in the field of rare diseases, the EU Directive on Patients’ Rights in Cross-border Healthcare, and others. By partnering with rare disease national alliances, EURORDIS also empowers national processes, and facilitates the adoption and implementation of national plans and strategies for rare diseases in European countries.