EURORDIS – Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 984 rare disease patient organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in 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.

Role in the Facilitate Project

EURORDIS will bring the voice of patients by conducting a research overview into existing studies on the views of patients in this area. This research overview will be conducted by Rare Barometer. This information will be then completed with specific feedback from the EURORDIS’ Digital and Data Advisory Group(DAG). The DAG is a group of legal experts and patient volunteers who will follow the progress of the project from the start and will bring their knowledge and perspective to the project. EURORDIS will be involved in WP1, WP2, WP3, WP5 and WP6 .