EURORDIS-Rare Diseases Europe Email Format

Non-profit OrganizationsÎle-de-France, France51-200 Employees

EURORDIS-Rare Diseases Europe is a non-profit alliance that unites more than 1,000 patient organizations from over 70 countries to improve the lives of people living with rare diseases in Europe. By connecting diverse stakeholders within and beyond the rare disease community, the organization aims to amplify the collective voice of patients and influence research priorities, policy development, and service delivery. Its work centers on ensuring timely and accurate diagnosis, access to advanced medical and social care, and broader social inclusion so that individuals with rare diseases can live independently and achieve their potential. Based in Paris, Île-de-France, the group operates as a collaboration across borders and disease areas, and its activities include developing frameworks and conducting surveys to inform ERN-related patient partnership and research efforts. In recent years, EURORDIS has announced partnerships and initiatives such as collaborative efforts with other organizations and the launch of surveys and frameworks to strengthen patient involvement in European health networks.

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