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, share best practices and increase knowledge of issues integral to member organisations and the rare disease community and environment in each member’s country.
EURORDIS Membership Meeting (EMM) 2025
The EURORDIS Membership Meeting, held every other year, brought together over 200 patients, patient organisations, policymakers, and other stakeholders for valuable networking and capacity-building workshops supporting those affected by rare diseases.
The most recent EMM took place from 22-24 May 2025.
Over the years, the EURORDIS Membership Meeting has grown into a platform for dialogue and exchange, enabling stakeholders like patient organisations, researchers, healthcare professionals, academia and healthcare industry representatives to learn from each other and exchange knowledge to improve the quality of care of people living with a rare disease.
Anja Helm, Senior Manager of Relations with Patient Organisations