Contributing to rare disease health policies

EURORDIS plays an active role in the processes to develop and implement national and European-level policies that bring real solutions to people living with rare diseases in the areas of prevention, diagnostics, care, research, medicines development, social services, information, education, and more.



EURORDIS makes key contributions toward the development and adoption of important rare disease and orphan medicines policies


The European Commission Expert Group on Rare Diseases

The group's mission is to support EU policy for rare diseases. It has adopted key recommendations on centres of expertise, ERN, patient registries and more.


EU Joint Actions on Rare Diseases and on Rare Cancers

Involving a broad range of stakeholders across Europe to shape policies, make recommendations aimed at ultimately improving the lives of patients.



Addressing the social challenges of people living with a rare disease & gaps in the coordination between medical, social and support services


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

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 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