The role of ERNs in boosting EU competitiveness through public-private partnerships

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Together for Rare Diseases (Together4RD) has published a report on the use of public-private partnerships (PPPs) in rare disease research, and the role ERNs have to play in this context in order to boost European competitiveness and drive change for the rare disease community. The report was developed following a high-level conference hosted by MEPs Stine Bosse (Renew Europe, Denmark) and András Kulja (EPP, Hungary), in collaboration with Together4RD, at the European Parliament on 24 September.

Drawing on the discussions held during the conference, the report puts forward a number of action items to facilitate ERN-industry collaboration, thereby accelerating innovation and improving the availability of treatments and care for patients. Some of the actions outlined in the report are:

  • Ensure the Biotech Act, Life Sciences Strategy and Multiannual Financial Framework promote collaborative research and provide resources for ERNs and industry to enter research partnerships.
  • Revise the 2019 ERN Board of Member States (BoMS) statement to explicitly allow and encourage ERN-industry research and data collaboration.
  • Develop and deploy a standardised EU-wide contracting and data-sharing framework for ERN-industry partnerships.
  • Support ERNs in becoming legal entities or forming shared-governance structures to streamline partnerships.
  • Establish an EU Rare Disease Action Plan with measurable targets and stable funding.

By combining the expertise of ERNs, the capabilities and resources of industry, and the input of patient communities, this type of PPP has the potential to deliver concrete change and improved health outcomes for all Europeans living with a rare disease. (© Orphanews 2025.11.25)