European Reference Networks: a flagship EU action for patients with rare diseases
date: 30/10/2023
Thanks to the European Reference Networks for Rare Diseases, the European Commission is making a difference to the lives of up to 36 million people across Europe who are living with a rare disease. This was the message of Stella Kyriakides, European Commissioner for Health and Food Safety, at the Spanish Presidency Conference on Rare Diseases in Bilbao on 29 September. This is a flagship project, which connects rare disease doctors and specialised healthcare providers from across Europe. With a EUR 77 million call for direct grants and an upcoming action with Member States worth over EUR 18 million, the Commission continues its commitments to support European patients and families affected by rare diseases and the need to ensure integration and sustainability of the European Reference Networks into national health systems.
Discussions at the European Reference Networks plenary meetings and their Board of Member States in Luxembourg this month included development of ERN registries and the upcoming Joint Action on integration of ERNs into national healthcare systems (JARDIN) that will pave the way for ERNs integration in the national healthcare systems and increase their sustainability. The Board of Member States also addressed the outcomes of the first evaluation of the European Reference Networks and Health Care Providers five years after their creation, underlining the successful nature of the ERN system.