The European Commission has published the first-ever Continuous Monitoring Report for the ERNs, confirming
a 160% increase in new patients referred to ERN centres between 2018 and 2024 — clear evidence of how this
EU infrastructure strengthens Europe’s health capacity and resilience. The report presents detailed indicators
across seven core areas, including clinical activity, guidelines, registries, training and cross-border collaboration,
reflecting the 2023 & 2024 monitoring cycles.
ERNs connect 1,600+ specialised units in 375 hospitals, creating a single pool of rare disease expertise no
country could build alone. An estimated 30 million EU citizens are living with a rare disease. That’s a huge
challenge, and ERNs are working together to make sure everyone gets the specialised care they need.
The report documents over 2,100 virtual CPMS consultations, delivering expert, multidisciplinary advice across
borders so patients can access specialist input without the need to travel.
ERNs, demonstrate the power of European cooperation — strengthening health resilience, supporting clinical
excellence, and improving access to expertise for rare disease patients across all Member States.
Read the report and learn more about how ERNs — and the clinicians and multidisciplinary teams who power
them — support patients across Europe.
Check out the full report here
