The Together4RD Toolkit is intended to support a broad range of collaborative activities in which ERNs and industry might partner.
It is Together4RD’s most comprehensive effort to date to strengthen research collaboration between ERNs and industry. ERNs, established to improve the diagnosis and care of people living with rare diseases, are recognised as key enablers of rare disease research due to their pan-European networks, data infrastructure, and deep disease-specific expertise. Yet, many of these networks operate in fields with limited prior R&D and lack experience in engaging with private sector partners.
The Toolkit is the result of significant outreach and consultative processes, and is intended to reflect the needs of both ERNs and of industry, having engaged key groups of stakeholders in a co-creation process. ERNs and industry may have different needs, and see value in different components of this resource, but the Toolkit provides added-value for both sets of stakeholders.
It was launched alongside ERDERA (the European Rare Diseases Research Alliance) in June 2025. To learn more about the toolkit, and its value to all stakeholders in European rare disease research, you can click here for a summary and recording of the webinar.
SECTION A
Background knowledge – ERNs, industry and the opportunity
Tool 1: The importance of Public Private Partnerships in Rare Diseases
Tool 2: Examples of initiatives which foster Public-Private Partnerships in rare diseases and complementary areas
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?
SECTION B
Conceptualising and firming-up a collaborative idea of research
Tool 6: Brief Summaries of the first Together4RD Pilots
Tool 7: Case Studies – examples of previous or ongoing public-private collaborations in the Rare Disease Space
Tool 8: Summary of areas or activities for potential ERN and Industry collaboration
SECTION C
Practical knowledge transfer – initiating and delivering a well-developed research collaboration
Tool 9: Report on the Experiences and Learnings from the first ERN-industry pilots supported by Together4RD
Tool 10: Key recommendations for both ERNs and industry from the experiences of the first ERN-industry pilots
Tool 11: Questions people should consider when approaching a new collaboration between ERNs and Industry
The Toolkit was launched in 2025 in collaboration with ERDERA. A webinar was held with Dr Daria Julkowska (ERDERA), Prof. Maurizio Scarpa (MetabERN) and the Toolkit author, Dr Victoria Hedley (Newcastle University) to explain the purpose, contents and value of the Toolkit to all stakeholders in the rare disease research ecosystem.
You can find a summary of the webinar here.