Open letter to the European Commision

The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks.

LOGO EU Kommission

Prof. Ansgar W. Lohse, ERN RARE-LIVER Coordinator, together with all other 23 European Reference Networks (ERNs) Coordinators and patient advocacy groups has co-signed an open letter addressed to the President of the European Commission, the President of the European Parliament and the Heads of Governments of EU Member States calling “to stand by the ERNs and to uphold their commitment to enable long-lasting impact in people’s lives and, fundamentally, give all people living with a rare or complex condition in Europe the same opportunities to access timely and adequate specialised healthcare”

This open letter outlines the pivotal role that ERNs have served in the last 6 years – since their establishment – in diagnosis and treatment of people living with rare diseases and facilitating cross-border healthcare. Additionally, the letter highlights the potential of the ERNs to harness EU solidarity to enhance health equality across countries and expand the capabilities of health systems.