We are very pleased to announce that the TEDDY Network will participate as beneficiary in the new Co-fund action, the European Joint Programme on Rare Diseases (EJPRD). The main objective of the programme 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 29 including 23 EU Member States, 4 Associated Countries (Switzerland, Israel, Norway, Turkey) and 4 non-EU Countries (Australia, Canada, Japan, USA). So far, 112 letters of intent have been received from 25 countries, and in the project are also involved 24 ERNs (European Research Networks) and 31 international organisations (e.g. Research Infrastructures, EURORDIS) and 3 charities. The programme is divided into four Pillars: Research Collaborative Funding, Coordinated Access to data and services, Capacity Building and empowerment, Accelerating the translation of high potential projects.
Moreover, the following transversal activities are foreseen by the programme: Integrative Research Strategy, Communication, Sustainability, Ethical, legal, regulatory and IPR issues.
TEDDY will be involved in the project in the communication activities and in particular will lead the activities (within Pillar 3) dedicated to the development and organization of educational materials and activities for paediatric patients. Several tools such as videos, cartoon and serious game for children and adolescents will be developed and disseminated and a yearly face to face “paediatric patients experts training course” will be organized.