FCT participated in the EJP RD - European Joint Programme for Rare Diseases, which brings together more than 135 organizations from 35 countries with the aim of creating a sustainable ecosystem and enabling a virtuous circle between research, healthcare and medical innovation. Portugal is also represented in this initiative by the Ministry of Health, through the Instituto Nacional de Saúde Doutor Ricardo Jorge (INSA).
The European Union Council Recommendation 2009/C 151/02 recognized rare diseases (RD) as a very relevant example of a research area that can strongly benefit from coordination on a European and international scale. RD research must be improved in order to overcome existing fragmentation and lead to an efficient use of data and resources, faster and more competitive scientific progress and, above all, to reduce the unnecessary and prolonged suffering of patients with RD.
At a time of massive data production, the need to efficiently reuse and interpret data, the introduction of "omics" into healthcare practices and the structuring of RD centers into European Reference Networks, it is crucial and time to maximize the potential of existing tools and programs by continuing to support them, promoting increases in scale, connections and, above all, adapting them to the needs of end users through the implementation of tests in real scenarios. In order to achieve these goals, the European Joint Program for DR (EJP RD) has set itself two major objectives:
- improve the integration, efficiency, production and social impact of research in RD, through the development, demonstration and promotion of the sharing of clinical and research data, materials, processes, knowledge and know-how at a European/global level;
- implement and further develop a more efficient funding model to support all types of RD research (fundamental, clinical, social, economic and health services).
To this end, the EJP RD initiative is organized into four Pillars, supported by central coordination and cross-cutting activities:
- Pillar 1: Research funding
- Pillar 2: Coordinated access to data and services
- Pillar 3: Capacity building
- Pillar 4: Accelerating translational research projects and improving the results of clinical studies
You can find more information about the projects funded under this initiative here
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