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Call on the EU institution and EU Member States' governments to stand by the European Reference Networks

Oct 6, 2023

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

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