A study conducted across all 24 European Reference Networks (ERNs) in 2025 has highlighted major gaps in preparedness for ensuring continuity of rare disease care during crises.
The findings have led ERN coordinators to propose a 10-point European preparedness plan aimed at strengthening access to care, medicines, diagnostics and digital health, and reinforcing the role of ERNs in future crisis response.
The article was published in The Lancet Regional Health-Europe.
