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As suggested by the concept of ERA-Nets, cooperation and coordination of the partners and their research programmes has to be carried out in a step-by-step approach at four levels:
- Systematic exchange of information and best practices
- Definition and preparation of joint activities
- Implementation of joint activities
- Funding of transnational research
Systematic exchange of information and best practices
Networking of research programmes first requires mutual knowledge of specific conditions, strategies and administrative practices. For this reason, the consortium will establish an inventory on the state of the art of rare disease activities and national programmes on rare diseases through a roadmapping excercise. In addition, a tool that will give useful and comprehensive overview of running projects in the field of rare diseases will be created (in collaboration with Orphanet). This set of data will provide important information to the programme managers about gaps and overlaps in existing research funding and will therefore be one basis for shaping the envisioned common programmes, both at the national and European level.
Strategic activities between programmes
The aim is to develop and influence the research policy on rare diseases. The experiences of the national research projects as well as the experiences of the European research projects will act as a fundament for further actions. Additional workshops and consultation with the external advisory board will be necessary to shape future programmes on the national and European level.
Implementation of joint activities
The objective is to organize joint activities that could overcome the inherent fragmentation of research in the field of rare diseases, and promote the multidisciplinary approach that is certainly one of the main challenges in this research area. To achieve this objective, 2 major actions should be undertaken, the mutual opening within partner programmes of rotational training positions, and the integration of technical platforms and/or centers within a transnational programme.
Transnational research activities
Fragmentation of research on rare diseases is a major hurdle in the development of efficient treatments. Hence, the European scale is best adapted to match the efforts to tackle rare diseases. One of the goals is to develop a framework and tools for the implementation of transnational research funding. Extensive preparation on administrative and procedural issues such as a common evaluation system is necessary to reach this goal. Most of these preparatory issues have already been worked out through the development of Joint Transnational Calls. In addition, best practice recommendations that optimise the use of data management systems and biobanks in common calls have also been created.
Interaction with the scientific community and the society
E-Rare will also establish internal and external communication infrastructures and develop specific information and communication with the scientific community, EU commission, external funding organisations, all relevant public stakeholders and patients’ organisations.
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