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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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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