Rare diseases have long been recognized as a field in which European and international collaboration is crucial for advances. Over the last few years, Europe has invested approximately €4.4 billion in research in rare diseases, through single or multi-partner projects funded under Framework Programmes (FP) for Research and Innovation (R&I).
Based on these principles and consolidating the lessons learned from previous co-financing initiatives, the new European Partnership on Rare Diseases (ERDERA), funded under Horizon Europe, kicked off. ERDERA aims to revolutionise the European rare disease research scenario, bringing significant benefits to 30 million rare disease patients through prevention, diagnosis and treatment.
The partnership, which includes 180 partners from 37 countries, will last 7 years, with an estimated budget of €380 million. Of these, approximately €150 million will be funded by the European Union under Horizon Europe, while the remaining will be provided by Member States, associated countries and public and private partners.
ERDERA is the largest co-funded partnership in rare disease research, which brings together these players to promote the common vision outlined in the Strategic Agenda for Research and Innovation (SRIA). The goal is to meet specific medical unmet needs and to improve coordination of European and national research programmes.
The Partnership main activities include:
- joint transnational calls for interdisciplinary and collaborative research and innovation projects;
- setting up of a clinical research network to accelerate preparation for clinical trials on rare diseases;
- alignment and integration of national and European research plans;
- services to support sharing and analysis of knowledge and data;
- strengthening of international cooperation by supporting the Scientific Secretariat of the International Rare Diseases Research Consortium (IRDiRC);
- promotion of collaboration models in public-private research;
- strengthening of competences and education of researchers, physicians and patients.
To align to the EU strategy on rare disease research, ERDERA’s launch event will take place on 28 October 2024, where representatives from the European Commission, the Ministries of Health and Research, ERDERA leadership team and patient organizations will take the floor.
