Patients Access to Diagnosis & Care

EU level initiatives are improving access to rare disease diagnostics and care across Europe.


Centres of Expertis (CoE)

Centres of Expertise are expert structures for rare disease management, offering patients the highest standards of care for diagnosis, treatments, and follow up.


European Reference Networks of Centres of Expertise (ERN)

ERN are physical or virtual networks that improve rare disease care by complementing and supporting existing national-level services and expertise.



Rare Disease registries increase knowledge by gathering data for research and medicines studies. They are a necessary infrastructure for the implementation of the European Reference Networks for rare diseases.


Newborn screening (NBS)

Newborn screening (NBS) is the process of systematically testing newborns at birth for certain treatable rare diseases. New technologies are expanding NBS practices in some countries.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. 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