The European Reference Networks (ERNs) have produced a position paper outlining their evolution since 2017, highlighting key achievements and documenting their progressive consolidation as emerging infrastructures supporting both the care and research of rare diseases. This paper is a milestone in ERNs existance as we approach a pivotal moment, and aims to ensure the recognition of the achievements towards a growing structural and funding stability.
This paper represents a key milestone in the development of the ERNs at a pivotal stage in their evolution, and seeks to secure recognition of their achievements while supporting progress towards greater structural maturity and sustainable funding.