Crisis Readiness for Rare Disease Populations: Lessons from the European Reference Networks

A study involving all 24 European Reference Networks (ERNs) assessed their responses to COVID-19 and the war in Ukraine. While 91.6% reported disruptions during the pandemic and 83.3% supported Ukrainian patients, 70.8% still lack effective emergency plans. Key challenges include limited access to specialised care, shortages of medicines and healthcare professionals, and disrupted diagnostic services. 

The authors propose a 10-point crisis preparedness plan to ensure continuity of care, calling for formal recognition of ERNs as emergency response hubs with dedicated funding.

The full publication is available here.