The European Reference Network representatives and people living with a rare disease across Europe, 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
In particular, ERNs ask for
- Secure long-term financial stability
- Designate Affiliated Partners and expand the disease coverage
- Support greater cross-ERN collaboration
- Establish treatment eligibility and molecular therapeutic panels
- Fully integrate ERNs into national health system services
- Urgently define and systematically collect and monitor 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 Networks
The complete letter can be found here