The Together4RD Position Statement

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development

This Position Statement analyses the barriers in ERN-INdustry interactions, and explains how Together4RD is seeking to move the needle, by learning from case studies, exploring frameworks for collaboration, and launching pilots to explore how best to plan and deliver multistakeholder interactions addressing real research needs.

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Tool 11: Questions people should consider when approaching a new collaboration between ERNs and Industry

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development

The consultations and outreach activities undertaken by Together4RD over the course of 2024 highlighted certain issues or topics which, whilst ultimately not exactly fitting the brief for this Toolkit (in the sense of there beingexisting tools, or tools Together4RD could prepare alone, for a 2024/5 launch) they nonetheless deserve a mention here as they are very much connected to the overall mission of Together4RD.

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

Published by

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

Published by

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

Published by

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

Published by

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

Published by

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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European Reference Networks

Published by IRDiRC

Clinical Collaboration European Reference Network Network Rare Disease Research and Drug Development Research Collaboration

Participating in research provides patients with access to cutting-edge treatments and benefit the population and the health services as a whole by leading to the development of more effective, high quality, cost-efficient treatments and healthcare delivery models. ERNs represent an unicum in the clinical and research worldwide collaborative panorama, indeed 24 ERNs span the over 6000 rare diseases by involving 300 EU HCPs and over 1000 specialized units in 25 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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