EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 1000 rare disease patient organisations in 74 countries. EURORDIS works to build a strong pan-European community of patient organisations and people living with rare diseases
Download the list of EURORDIS Member Associations.
Every year, EURORDIS holds its General Assembly, where full members elect the Board of Directors and approve the Activity and financial reports of the previous year and the Work Plan and Budget of the year.
The General Assembly is organised as part of the EMM (EURORDIS Membership Meeting) or as a stand-alone event in the years when the ECRD (European Conference on Rare Diseases and Orphan Products) takes place.
The next EURORDIS General Assembly will take place in Stockholm 25 May, 2023.
The next EMM will take place face to face 25/27 May 2023 in Stockholm.
Every other year, the EURORDIS Membership Meeting provides over 200 patients, patient organisations, policy makers and other stakeholders with networking opportunities and capacity-building workshops to improve the lives of those living with a rare disease.
The EURORDIS Membership Meeting workshops are designed to allow patients to develop the knowledge and ability to advance policies and services for rare disease patients in their country and local communities. The EURORDIS Membership Meeting provides an opportunity for EURORDIS members to network, sharing best practices and increasing knowledge of issues integral to member organisations and the rare disease community and environment in each member’s country.
Anja Helm,
Senior Manager of Relations with Patient Organisations