What We Do

EURORDIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness, and many other actions designed to reduce the impact of rare diseases on the lives of patients and family.


Advocating for Patients

EURORDIS represents 30 million patients affected by over 5000 distinct rare diseases and advocates within the European Commission and other European institutions for policies that address the needs of patients and their families.


Healthcare and social policies and services

EURORDIS is active in promoting healthcare and social policies and services that bring solutions to people living with rare diseases


Medicines & Therapies

EURORDIS advocates for policies that promote the development and equitable distribution of rare disease medicinal products and also initiates and participates in many activities


Research Policy and Actions

EURORDIS actively contributes to rare disease research policy development and is a partner in many initiatives and projects


Patient Empowerment and Training

EURORDIS’ training programmes and resources are designed to strengthen the capacity of rare disease patients’ representatives


Information & Networking

EURORDIS encourages rare disease patients and organisations to share information, experience and resources

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