EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 974 rare disease patient organisations in 74 countries. We are the voice of 30 million people affected by rare diseases throughout Europe.
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.
EURORDIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness, and many other actions designed to reduce the impact of rare diseases on the lives of patients and family.
EURORDIS is made up of almost 40 people based in our Paris, Brussels and Barcelona offices.