In January 2019, the European Joint Programme on Rare Disease (EJPRD) started its activities aimed to create a comprehensive, sustainable system allowing virtuous circle between research, care and medical innovation. TEDDY Network is among the beneficiaries of this new Co-fund action and provides its contribution in this programme intended to create a research and innovation pipeline “from bench to bedside”, ensuring a rapid translation of research results into clinical applications and uptake in healthcare for the benefit of the patients.
Donato Bonifazi, as current legal representative of the TEDDY Network, has explained the importance of its participation in this initiative and which will be its contribution.
We asked him which needs underlie the creation of a European strategy to strengthen and join the efforts in the field of Rare Disease research: “In the Era of the massive generation and the omics science, it is necessary to have a well defined structuration of RD care and research centers as well as allow their access to the cutting edge technologies in order to adapt them to the needs of end-users.”
Which will be the contribution of TEDDY and why is it important to include a paediatric organization in EJP RD? “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. TEDDY will provide its experience in the field of paediatrics, ensuring the right awareness on the importance of the paediatric aspects in the field of the rare disease research. All TEDDY partners involved in rare diseases area are willing and hoping that the paediatric role in EJPRD will be implemented also within the core of the methodological and research activities.”
More informations here.