Role of CVBF
The main objective of the European Joint Programme on Rare Diseases (EJP RD) is to create a research and innovation pipeline “from bench to bedside” ensuring rapid translation of research results into clinical applications and uptake in healthcare for the benefit of patients.
In addition, the programme is aimed to improve integration, efficacy, production and social impact of research on rare diseases through the development and promotion of sharing of research and clinical data, materials, processes, knowledge and know-how, and through an efficient model of financial support for research on rare diseases. The number of participating countries is 35 including 27 EU Member States (Austria, Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Croatia, Ireland, Italy, Netherlands, Latvia, Lithuania, Luxembourg, Malta, Poland, Portugal, Romania, Spain, Sweden, Slovakia, Slovenia, United Kingdom), 7 Associated Countries (Armenia, Georgia, Switzerland, Israel, Turkey, Norway, Serbia) and 1 non-EU Country (Canada). So far, the project brings over 130 institutions including research-funding organization, ERNs (European Reference Networks), European research infrastructures.
The programme is divided into four main Pillars: Funding of research, Coordinated Access to data and resources, Capacity Building, Accelerated translation of research projects and improvement outcomes of clinical studies. Moreover, the following transversal activities are foreseen by the programme within Pillar 0: Integrative Research Strategy, Communication, Sustainability, Ethical, legal, regulatory and IPR issues.
The project will see the participation of CVBF that will bring the paediatric competences and expertise within work package 19 aimed to support the Rare Diseases (RD) community to more effectively translate high quality research into high impact interventions for the RD patient community, by creating a bridge between basic research and medical innovation, otherwise known as the “bench to bed-side” approach. To this aim, self-help resources and active project mentoring and technical support will be provided to selected projects and CVBF will contribute to provide paediatric self-help resources and will pay particular attention on paediatric projects to be assessed and supported within these activities.
Moreover, CVBF will support the project activities aimed to improve efficiency and outcomes of translational research, and develop novel funding concept to reduce the ‘valley of death’ funding gap.
Moreover, CVBF will be involved in the evaluation of the quality of the EJP RD activities and the achievement of the expected project goals within the Coordination and Management Work Package.
European Union’s Horizon 2020 research and innovation programme under grant agreement N°825575