Tool 10: Key recommendations for both ERNs and industry from the experiences of the first ERN-Industry pilots

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European Reference Network Industry collaboration Rare Disease Research and Drug Development

Based on the extensive interviews with stakeholders involved pilot project, a list of recommendations has been distilled, to guide future ERN and industry projects and collaborations

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Tool 9: Report on the Experiences and Learnings from the first ERN-Industry pilots supported by Together4RD

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European Reference Network Industry collaboration Rare Disease Research and Drug Development

In 2024, the Together4RD Secretariat interviewed key individuals from both Industry and ERNs, about their experiences in launching the first 3 ERN-Industry pilot projects. These interviews were intended to better understand the respective experiences of conceptualizing and initiating these pilots – from who came up with the original idea, to how the project proposals have taken shape, covering activities up to the launch phase (approximately). The main insights are summarized in this Report

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Tool 8: Summary of areas or activities for potential ERN and Industry collaboration

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European Reference Network Industry collaboration Rare Disease Research and Drug Development

Stakeholders sometimes struggle to consider the range of activities on which ERNs and Industry could collaborate, besides the more traditional engagement around clinical trials, or more recently, partnering with multiple companies through the European Federation of Pharmaceutical Industries and Associations (EFPIA), in a large project via the Innovative Medicines Initiative, for instance. This resource builds upon material prepared for the comprehensive Together4RD Position Statement, to present a table listing a broad range of potential projects and activities which might be well-suited to ERN and Industry collaboration.

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Tool 7: Case Studies – examples of previous or ongoing public private collaborations in the Rare Disease space

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European Reference Network Industry collaboration Rare Disease Research and Drug Development Use Case

In addition to these initial 3 pilots, Together4RD has identified multiple case studies in the rare disease arena which may also serve as food for thought for other stakeholders wishing to follow suite and engage in projects

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Tool 6: Brief Summaries of the first Together4RD Pilots

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European Reference Network Industry collaboration Rare Disease Research and Drug Development Use Case

The first Together4RD pilots resulted from an open call launched in summer 2022, inviting all ERNs to submit an expression of interest outlining proposed industry collaboration, added value, readiness, involved centres, and any existing assets, data or infrastructure to build upon.

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EATRIS Matchmaking for lab services

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core facility EATRIS Industry collaboration technology platforms

EATRIS facilitates academic collaborations with industry. It identifIes scientific & medical expertise and find the capacity to provide access to the latest technologies and core facilities from within our technology platforms.It serves as a single point of contact, provides (legal) support and acts as a negotiator to facilitate project initiation and monitor project execution when needed. Its infrastructure consists of 115+ biomedical research institutes in 14 EU countries.

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The Innovation Management Toolbox was originally developed through funding from the EJP RD project, which received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 825575. The continued development and maintenance of the Toolbox are now supported by the ERDERA partnership, funded under the European Union’s Horizon Europe Research & Innovation programme, grant agreement No. 101156595.

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