The European Rare Diseases Research Alliance (ERDERA)
ERDERA proposal was submitted under Horizon Europe on 19 Sept. 2023 for funding under the EU Research & Innovation funding programme Horizon Europe as a co-funded partnership between the European Commission, European Member States, and beyond. The European Rare Diseases Research Alliance (ERDERA) is a partnership that will be organised around the following ambition, vision, and mission:
AMBITION
ERDERA has the ambition to improve the health and well-being of the 30 million people living with a rare disease in Europe, by making Europe a world leader in RD research and innovation, to support concrete health benefits to rare disease patients, through better prevention, diagnosis and treatment. It will support the EU commitment to UN 2030 Agenda's Sustainable Development Goals: (i) Good health & wellbeing (SDG3), (i) industries, innovation and infrastructure (SDG9), and (in) Reduced inequalities (SDG10) as well as the EU political priorities (a Europe fit for the digital age, an economy that works for people, a stronger Europe in the world, Promoting our European way of life and democracy).
VISION
To leave no one behind, ERDERA will deliver a RD multi-stakeholder ecosystem by supporting robust patient need-led research, developing new treatments and diagnostic pathways, by using the power of health and research data and spearheading the digital transformational change in RD research and innovation (R&l).
Finally, ERDERA will structure the European Research Area on RD by supporting the coordination and alignment of national and regional research strategies, including the establishment of public-private collaborations, through research activities all along the R&l value chain, ensuring that the journey from knowledge to patient impact is expedited, thereby optimizing EU innovation potential in RD.
This vision will be enabled by a tripartite mission to be accomplished by the end of ERDERA.
MISSION
- Bring and share supporting R&l knowledge, resources and services from across Europe under one roof so that every RD research project would benefit from cross-disciplinary expertise, goal-oriented study planning and efficient execution.
- Enable every consenting patient living with a rare disease to be findable and enrolled in a suitable clinical study, by boosting generation and sharing of FAIR-compliant, regulatory-quality data from diversity of sources, with the ultimate goal to fasten advances in prevention, diagnosis, disease knowledge and treatment.
- Make Europe a global leader on rare disease research through a significant increase in investment to spur innovation, by aligning the regional, national and European research and innovation priorities, leading to job creation and improving EU competitiveness in R&l.
The participation of 178 Organisations:
- 40 funders
- 81 research performing organisations
- 9 patients' organisations
- 3 research infrastructures
- 22 private for-profit
- partners (industry & SME)
- 23 other (univ, hospital, non-profit, public administration)
Of 37 Countries: 25 EU member states, 9 associated countries, 3 non-EU.