Browse Resources

Rare disease research: what industry contributes in knowledge and resources

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development

This webinar highlighted how industry contributes to PPPs beyond funding, and provided attendees with examples of how industry has brought value to research projects conducted with European Research Networks (ERNs) in recent years.

View this resource Bookmark this resource

ERNs: a key EU infrastructure to partner for research activities, the why and the how

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development

The resource explains that European Reference Networks (ERNs) are a major EU healthcare and research infrastructure that bring together clinical expertise, data and specialised resources across Europe to tackle rare and complex diseases and are valuable partners for collaborative research activities. It emphasises the untapped potential of ERNs to engage with the pharmaceutical and biotech sectors, advocating for greater awareness and public–private partnerships to accelerate rare disease research and development and benefit patients

View this resource Bookmark this resource

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.

View this resource Bookmark this resource

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

View this resource Bookmark this resource

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.

View this resource Bookmark this resource

Position statement on collaboration between ERNs and industry

Published by

European Reference Network Industry collaboration Rare Disease Research and Drug Development

Together4RD’s Position Statement highlights that although European Reference Networks (ERNs) have significant potential to accelerate rare disease research and innovation, collaboration with industry has been limited due to structural, regulatory and governance barriers that hinder robust partnerships. It calls for strategic action, frameworks and pilot models to enable transparent, well-supported ERN–industry collaborations that harness collective expertise and resources to better address unmet needs in rare disease research and improve Europe’s competitiveness in the field.

View this resource Bookmark this resource

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

View this resource Bookmark this resource

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.

View this resource Bookmark this resource

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.

View this resource Bookmark this resource

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

View this resource Bookmark this resource

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.

IMT Feedback

Did the IMT help you in finding the resource you needed?

Rare disease research: what industry contributes in knowledge and resources

ERNs: a key EU infrastructure to partner for research activities, the why and the how

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

Position statement on collaboration between ERNs and industry

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