The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks
The objective of this action is to guarantee the continuation of the ERNs given the relevant role in the improvement of the live of rare disease patients in Europe.
On 3 October 2023, the 24 ERN Coordinators, ePAGs representing their ERN on the EURORDIS, ePAGs Steering Committee (Loris Brunetta & Jacqueline Dubow for the ERN-EuroBloodNet), and EURORDIS co-signed an Open Letter calling on EU institutions and national governments to stand by European Reference Networks.
The letter is addressed to:
- Ursula von der Leyen, President of the European Commission
- Roberta Metsola, President of the European Parliament
- Heads of Governments of EU Member States
The Cabinet of Commissioner for Health and Food Safety, Stella Kyriakides, received it as well.
The joint forces of the rare disease community aim to call on the EU institutions and EU Member States' governments to stand by the European Reference Networks 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.
The objective of this action is to guarantee the continuation of the ERNs given the relevant role in the improvement of the live of rare disease patients in Europe.
Discover in the link the Open Letter together with the Press Release from EURORDIS for more information.