The Network Coordinators of the 24 European Reference Networks have written a position statement on the future involvement of the United Kingdom within ERNs. In this paper the ERN coordinators highlight the importance of the UK’s continuous involvement in ERNs.
“Rare in presentation, these diseases are devastating for the approximately 30 million EU citizens living with a rare disease. Rare diseases often mean a lifetime pursuit to find an accurate diagnosis, an increasing burden of needs and a significantly reduced quality of life. ERNs represent a paradigm shift in how we work together, breaking the isolation of patients, connecting information and data and fostering collaboration between experts and researchers.
The ERNs have only recently been formally established and are at a crucial stage in their genesis, and we believe that the loss of the active input of the UK groups would be disadvantageous for the UK and the EU. The UK National Health Service (NHS) is involved in 23 of the 24 networks. It is of the utmost importance to secure the continued and lasting involvement and fruitful collaboration of UK colleagues, especially in the formative years of the ERNs.”