Information & Networking
EURORDIS empowers people living with a rare disease by encouraging them to share information, learn from each other, and join forces. We believe that our strength is in numbers and through acting together in a coordinated way we can move forward solutions.
EURORDIS has 751 member organisations in 66 countries, representing altogether more than 4000 different diseases. EURORDIS uses its pivotal position to build the capacity of patients and organisations to inform, educate, and raise awareness about rare diseases.
We initiated and coordinate International Rare Disease Day, held on the last day of February each year. The annual Membership Meeting, the European Conference on Rare Disease and Orphan Products (ECRD), and the Rare Disease Day Policy Event bring stakeholders together to exchange knowledge and share resources. The EURORDIS InfoHub, Policy Fact Sheets and EURORDIS TV are amongst many resources available on the EURORDIS website that keeps the rare disease community informed on current topics in the field.
We also promote instruments and services that foster the exchange between patients and organisations. The RareConnect.org social forum allows patients to interact in a moderated setting. We also facilitate the networking of specific rare disease Help Lines across Europe.