Services & Training Resources Centre

In this section you will find details of how EURORDIS promotes the implementation of services adapted to the needs of people living with a rare disease, as well details on the extensive training that EURORDIS provides to rare disease patient representatives.

This training is provided through free online training modules and the EURORDIS Summer School. Topics covered include: medical research, ethics, the regulatory framework, the European Medicines Agency, benefit-risk assessment & pharmacovigilance and market access.


EURORDIS Open Academy

The EURORDIS Open Academy brings together all EURORDIS trainings with the goal of building the capacity of rare disease patient advocates.


Help line services

EURORDIS promotes, networks, trains and advocates on behalf of Rare Disease Help Line Services. The Rapsodyonline site lists and maps existing services around Europe.


Specialised Social Services

Specialised Social Services are instrumental to the empowerment of people living with rare diseases and essential to the improvement of their well-being and health.


RareConnect, the online network for rare disease communities, brings together patients, families, and groups from around the world who might otherwise be isolated


EURORDIS Community Advisory Board (CAB) Programme

Patient Community Advisory Boards (CABs) are groups established by patient advocates to discuss the latest developments, challenges and issues related to medical research in their disease area.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases