EJP RD - Joint European Programme on Rare Diseases

FCT participates in the EJP RD - Joint European Programme for Rare Diseases, which brings together more than 135 organizations from 35 countries with the aim of creating a sustainable ecosystem and allowing a virtuous circle between research, health care and medical innovation. Portugal is also represented in this initiative by the Ministry of Health, through the National Institute of Health Doutor Ricardo Jorge (INSA).

The EU Council Recommendation 2009/C 151/02 recognised rare diseases (RD) as a very relevant example of a research area that can strongly benefit from coordination on a European and international scale. Research in rare diseases should be improved to overcome the existing fragmentation and lead to efficient use of data and resources, faster and more competitive scientific progress and, most importantly, reduce unnecessary and prolonged suffering of patients with rare diseases.

In a time 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 into European Reference Networks, it is crucial and time to maximize the potential of already existing tools and programs, continuing to support them, promoting scale-up, linkages and, most importantly, adapting them to end-users' needs by implementing real-life scenario testing. In order to achieve these goals, the Joint European RD Program (EJP RD) has designed two major objectives:

• improve the integration, efficiency, output and societal impact of research in RD by developing, demonstrating and promoting 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 research in DR (fundamental, clinical, social, economic, and health services).

To this end, the EJP RD initiative is organized into four Pillars, aided 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 clinical trial results

You can find more information about the projects funded under this initiative here