🚨 [Viewpoint] Crisis readiness for rare disease populations: learnings and recommendations by the European Reference Networks

Patients with rare diseases are particularly vulnerable during emergencies due to dependence on specialised care pathways, medicines, and expertise. European Reference Networks (ERNs) for rare and complex diseases have operated since 2017 and were confronted with two major crises: the COVID-19 pandemic and the war in Ukraine. To assess ERN experiences, responses, and preparedness for crisis and disaster situations, we conducted a cross-sectional survey of all 24 ERN coordinators between July and September 2025.

This is a developing story.

Source: [Viewpoint] Crisis readiness for rare disease populations: learnings and recommendations…