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Tool 2: Examples of Initiatives which Foster Public-Private Partnerships in Rare Disease and Complementary Areas

Published by

European Reference Network European Union Industry collaboration Network Rare Disease Research and Drug Development

This resource presents examples of programmes and structures which facilitate public private partnerships in rare disease or a complimentary area.

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Tool 1: The Importance of Public Private Partnerships in Rare Diseas

Published by

European Reference Network Industry collaboration Private Public Rare Disease Research and Drug Development

This resource explains the importance of public-private partnerships or collaborations for the rare disease community, in the light of the needs of the rare disease field and the current climate around research and innovation

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Together4RD Toolkit Master Document

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development Research Collaboration

In this Master Document, you can navigate between the tools and understand the background, rationale and value behind the Toolkit, which aims to support ERNs and Industry to create and sustain public-private partnerships in rare disease research.

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Tool 3: What are ERNs?

Published by

Clinical Collaboration European Reference Network European Union Rare Disease Research Collaboration

This tool explains the origins of ERNs and highlights key resources on their conceptualisation, set-up and operations, including the legal documents on which they are based. It also points to reports and recommendations that analyse the achievements and added value of ERNs to date, indicating where there may be room for improvement, and to key resources showcasing the achievements of ERNs overall as well as where to learn more about the achievements of specific ERNs.

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Tool 4: The advantages of ERNs as partners for research

Published by

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

This Tool illustrates how and why ERNs hold so much potential for research. It is based upon content prepared for the Together4RD Position Statement of 2023, and has been updated to include the latest statistics and development connected with ERNs’ research potential

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Tool 5: Needs and priorities for Industry – and what does Industry need in a collaboration with ERNs

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development Research Collaboration

This is a summary of important considerations for stakeholders less used to working with Industry, coupled with a selection of resources (webinars, reports, publications) to help convey some fundamental principles and realities for the private sector in contemplating collaborations with ERNs

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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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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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Tool 2: Examples of Initiatives which Foster Public-Private Partnerships in Rare Disease and Complementary Areas

Tool 1: The Importance of Public Private Partnerships in Rare Diseas

Together4RD Toolkit Master Document

Tool 3: What are ERNs?

Tool 4: The advantages of ERNs as partners for research

Tool 5: Needs and priorities for Industry – and what does Industry need in a collaboration with ERNs

The Together4RD Position Statement

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

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

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