EURORDIS – Rare Diseases Europe

EURORDIS is a non-profit alliance representing more than 1,000 rare disease patient organisations across 77 countries, advocating for the 30+ million people living with rare diseases in Europe.

Founded to amplify the patient voice in research, policy, and clinical care, EURORDIS works to ensure that people living with rare conditions are actively involved in decision-making at national and European levels. It plays a central role in global awareness efforts, co-organising Rare Disease Day alongside the National Organization for Rare Disorders, and convenes stakeholders through the European Conference on Rare Diseases (ECRD).

Through initiatives such as RareConnect and Rare Barometer Voices, EURORDIS gathers patient insights to inform clinical research and policy. It collaborates with research consortia, pharmaceutical companies, and universities to advance rare disease understanding and the development of orphan drugs.