Table 3 Summarising the Together4RD Policy Asks [49]

Recommendation 1: ERN Governance

Recommendation 2: Public–Private Research Collaboration

Promote transparent governance structures and open dialogue to empower and advance ERN—industry collaboration

Create a Forum (or Fora) for public–private exchange of pre-clinical knowledge for ERNs

Recommendation 3: Independent, Well Resourced and Effective ERN Registries

Recommendation 4: EU Rare Disease Action Plan Collaboration

Ensure ERN registries are adequately financed via public funds and remain independent, whilst clarifying & optimising their potential for collaboration

Create a comprehensive European Action Plan for Rare Diseases that supports public–private partnerships