The TEDDY Model for Engagement and Empowerment for young people in Care Transition
The TEDDY Network announces its participation in the 1st National Summit on Rare Disease Policies held in Rome on 15 – 16 June 2026.
The institutional event was attended by three young representatives from the Italian groups KIDS Bari and KIDS Umbria, whose presence reflected the importance of directly involving children and adolescents in discussions and decisions concerning health policies and care pathways. Including young people in these contexts not only recognises their right to be heard, but also strengthens the relevance, and sustainability of policies by integrating their lived experiences and perspectives.
During the first day of the Summit, the outcomes of eight thematic round tables were presented, contributing to the development of strategic documents currently under preparation: the Rome Charter and the Proposal for Europe, which will include recommendations and proposals at both national and European levels. The Rome Charter will subsequently be made available in English. The TEDDY Network actively contributed to this process.
TEDDY Network contributed to Round Table 8, dedicated to “The transition from paediatric to adult care and from adult to geriatric care”. The session was coordinated by the Head of the Department of Prevention, Research and Health Emergencies, Dr Maria Rosaria Campitiello.
Within this context, the TEDDY Network presented its proposal to address critical issues related to rare diseases during the transition from paediatric to adult care through the TEDDY model of paediatric patients’ engagement and empowerment. The model is formalised in the TEDDY Chart and has been implemented since 2017 through the TEDDY KIDS Network, which includes Young Persons Advisory Groups (YPAGs) active across Europe.
The TEDDY model promotes a progressive involvement of children and adolescents in health-related decision-making processes, ensuring access to information, opportunities to express their views, and meaningful participation in decisions affecting their care and involvement in research. The TEDDY Model is currently being translated into practice and further strengthened through European projects focused on rare diseases, including ERDERA, OrphaDev4Kids, and INVENTS. Through these initiatives, TEDDY creates structured opportunities for children and adolescents to become informed and active contributors in research and health-related decision-making.
By promoting age-appropriate participation, the TEDDY model supports the development of self-determination, self-awareness, and health literacy, enabling young patients to better understand their condition, express their preferences, and actively contribute to decisions concerning their health and well-being.