New Cross-ERN publication! "Crisis readiness for rare disease populations: learnings and recommendations by the European Reference Networks"
European Reference Networks share lessons learned and recommendations to strengthen preparedness and continuity of care for people living with rare diseases
A new cross-ERN publication, "Crisis readiness for rare disease populations: learnings and recommendations by the European Reference Networks", has been published in The Lancet Regional Health - Europe.
The publication brings together the experience of the 24 European Reference Networks during the COVID-19 pandemic and the war in Ukraine, examining the challenges faced by rare disease communities and the capacity of ERNs to respond to crisis situations.
The study highlights key vulnerabilities, including access to specialised healthcare, shortages of medicines and medical devices, staff availability and interruptions to diagnostic services. It also identifies the need to move from reactive responses towards structured and sustainable crisis preparedness.
Based on these findings, the authors propose a 10-point preparedness plan covering areas such as cross-border access to specialised care, continuity of care through digital and remote solutions, access to medicines and diagnostics, patient and healthcare professional preparedness, clinical trial continuity and the formal integration of ERNs into European and national emergency response mechanisms.
Read the full publication: Crisis readiness for rare disease populations: learnings and recommendations by the European Reference Networks