Objectives
E-Rare-2 will build on the experience and results of the previous E-Rare ERA-Net, its main objectives are:
1. Updating and extending the information exchange on funding of rare disease research by different countries, both within and outside the consortium (e.g. USA, Japan, etc.). The analysis of this information will reveal opportunities and needs for the set-up of new research programmes and help to elaborate recommendations. Particular attention will be given to exchanges with new EU member states like Bulgaria, Romania or Czech Republic, where growing awareness for rare diseases could generate specific programmes and/or funding actions for rare diseases research.
2. Funding transnational collaborative research through yearly joint transnational calls. This is the most important and effective joint activity to enhance the cooperation between European scientists working on rare diseases and thus reducing the fragmentation of research in this field. Two “general” joint calls with broad and open topics are foreseen to allow researchers to choose their projects based on state of the art and research demand for the specific disease. This bottom-up approach is seen as the most suited to cluster the most competitive national research groups in common projects, and effectively opens the national programmes for more international collaboration. Two "focused" joint calls are also planned to address themes of rare diseases research that need special attention. The calls are designed to promote the multidisciplinarity necessary for progressing towards a translational research approach, thus serving the patients suffering from rare diseases. The resulting synergies will ensure a higher cost-effectiveness of the limited funding.
3. Analyzing in depth the E-Rare joint call activities. To a) define common indicators and harmonize monitoring of funded projects among the partners; b) provide feedback to the planning activities in the network so that strategies for future funding programmes within E-Rare-2 and beyond can be adjusted to maximize the scientific output and topical coverage.
4. Transforming E-Rare into a sustainable network. This includes the development of a common strategic framework programme for rare disease research which aims at increasing and diversifying the current activities through the increase of funding commitment as well as exploring the inclusion of new funding agencies (e.g. charities, agencies from additional EU, ERA and non-ERA countries etc.) and new research topics (e.g. clinical trials).
5. Ensuring that all stakeholders are actively engaged in, and informed on, the activities of E-Rare.
6. Enlarging the consortium to include a critical mass of European (associated) research funding agencies.