Together 4 Rare Diseases

Together 4 Rare Diseases

Project overall strategic goals

To find consensus on future models for collaboration for European References Networks and industry, which can unlock solutions for people living with a rare disease in Europe

Short description of the main outputs of the project/coalition

Publication of the T4RD’s position paper analysing the barriers of ERN-industry collaboration, and explains how Together4RD is seeking to move the needle here, by learning from case studies and exploring frameworks for collaboration to explore how best to plan and deliver multistakeholder interactions addressing real research needs.
Launch of industry – ERNs collaboration pilots on diagnosis

How does the project/coalition address the specificities of the white spots?

By finding models for collaborations between industry and European Reference Networks we accelerate rare disease research, leveraging ERNs’ potential, industry expertise enabling sharing knowledge and resource. T4RD is developing a collaboration framework and engaging policymakers to promote ERN-industry collaboration as a positive step towards meeting theses unmet needs and securing future investment.

How is the project/coalition a public-private partnership? 

Our multi-stakeholder initiative is funded by 4 pharmaceutical companies, and its governance also includes ERN coordinators, other research actors, patient representatives and observers from the European Commission

How being a PPP helps to address the white spots?

Addressing the needs of the white spots requires policy support across the entire medicine lifecycle to better coordinate all actors.