Work Plan
The fragmentation of resources for research on the 6000-8000 rare diseases and the lack of treatments for the majority of them necessitate transnational collaboration with multidisciplinary approaches to map prevalence, build patient registries, unravel underlying molecular defects and pathophysiological mechanisms, identify biomarkers, develop new diagnostics and perform clinical studies for the development of treatments. E-Rare has been linking research funding organisations since 2006 to develop a coordinated European approach of rare diseases research. The current E-Rare-2 project (Oct 2010 – Sep 2014) foresees the following activities:
Work Package 1/ Consortium coordination, management and communication
Work package 1 entails management and coordination activities and the set up of efficient communication tools for researchers, R&D and health policy makers interested in rare disease research. The E-Rare Extranet will serve as a collaborative platform allowing all partners to effectively interact and to cope with their specific tasks.
Work Package 2/ State-of-the-art of rare disease research funding: analysis and conclusions for the future
Work Package 2 analyses the state of the art on rare disease research funding both within Europe and in selected countries outside Europe in order to reveal opportunities and needs of existing and new rare disease research programmes and project funding.
Work Package 3/ Funding of transnational research cooperation: general calls
The funding of transnational collaborative research is the most important effective joint activity to enhance the cooperation between European scientists working on rare diseases and thus reduce the fragmentation of research in this field. E-Rare-2 concentrates an important part of its activities on launching transnational (collaborating teams from several countries) calls and foresees to launch a general call every other year.
Work Package 4/ Funding of transnational research cooperation: focused calls
Several analyses performed in E-Rare-1 as well as feedback from the scientific community demonstrated the importance to address specific rare diseases research themes. In alternation with the general calls, E-Rare-2 plans the implementation of transnational (collaborating teams from several countries) calls that will focus on specific topics (e.g. mobility of young researchers, harmonization of patient databases, use of specific technologies…) every other year.
Work Package 5/ Assessment of achievements of E-Rare funding programme and monitoring of consortium activities
This Work Package is dedicated to the assessment of E-Rare and the E-Rare-1 joint call activities. On the basis of the outcomes of this assessment, E-Rare-2 will adapt its funding strategy accordingly. A monitoring tool will be developed to allow the assessment of the progress made by the E-Rare-2 funded projects. Finally, a monitoring of the Consortium activities will be implemented taking into account the expectations of the Consortium partners.
Work Package 6/ Strategic research policy development and network sustainability
This work package will develop a common strategic research funding policy for rare diseases beyond E-Rare-2. The activities of E-Rare-2 are meant to gain the character of a joint programme with more than one funding initiative repeated regularly. E-Rare-2 will define its role within the context of other EC-funded initiatives (e.g. EC, ESFRI, BBMRI, EUROPLAN, Orphanet etc.) and EC committees (EUCERD - European Union Committee of Experts on Rare Diseases) to avoid duplication and contribute to a comprehensive funding portfolio for rare diseases in Europe.
Work Package 7/ Dissemination of knowledge and achievements
Work Package 7 will operate in collaboration with the other work packages in order to collect their results, capitalize the information and ensure wide and targeted dissemination of the knowledge generated by E-Rare activities.