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. In this initiative, Portugal is also represented by the Ministry of Health, through the National Institute of Health Dr. 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 greatly benefit from coordination on a European and international scale. RD research must be improved in order to overcome existing fragmentation and lead to the efficient use of data and resources, faster and more competitive scientific progress and, above all, reduce the unnecessary and prolonged suffering of RD patients.
In an era of massive data production, the need to efficiently reuse and interpret data, the introduction of "omics" in healthcare practices, and the structuring of RD centers in European Reference Networks, it is crucial and timely to maximize the potential of existing tools and programs, 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-world scenarios. In order to achieve these goals, the European Joint Program for RD (EJP RD) has designed two major objectives:
- improve the integration, efficiency, output, and societal impact of RD research by developing, demonstrating, and promoting the sharing of clinical and research data, materials, processes, knowledge, and expertise at a European/global level;
- implement and further develop a more efficient funding model to support all types of RD research (basic, 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: Training
- Pillar 4: Accelerating translational research projects and improving clinical trial outcomes
You can find more information about the projects funded under this initiative here.
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