Open Letter: EU – Please Stand By The ERNs
Posted on 4 October 2023 in News
ERN eUROGEN has co-signed an open letter in which the ERN Network Coordinators and people living with a rare disease across Europe have asked Ursula von der Leyen (President of the European Commission), Roberta Metsola (President of the European Parliament) and the Heads of Governments of EU Member States to stand by and uphold their commitment to the ERNs 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.
In particular, the ERNs asked for:
- Secure long-term financial stability
- New Affiliated Partners to be designated
- Disease/expertise area coverage to be expanded
- Greater support for cross-ERN collaboration
- Full integration of the ERNs into national health systems
- Urgent definition and systematic collection/monitoring of health and experienced-based outcome measures
- Better support and recognition of the contribution of volunteer patient organisations, patient representatives, healthcare providers and clinicians in the ERNs
