TEDDY Network is proud to announce the publication of the article “Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement” in Frontiers in Pediatrics (doi.org/10.3389/fped.2026.1886270).
Published on 29 September 2026, the article was developed by the International Rare Diseases Research Consortium (IRDiRC) Working Group on Young People Engagement to address the need for practical, structured and developmentally appropriate approaches to involving children, adolescents and young adults living with rare diseases in research. The work was funded by the European Commission through the European Rare Diseases Research Alliance (ERDERA), under grant agreement No. 101156595.
The publication brings together 16 international participants, including young people with lived experience of rare diseases, patient advocates, researchers and clinical specialists. The publication explores youth engagement as a continuum, from informing and consulting to advisory roles, co-production, shared decision-making and youth-led research, while highlighting the importance of considering age, developmental stage, individual needs, preferences and research context. A practical checklist and process map were developed to help researchers plan and implement appropriate approaches to youth engagement, including considerations related to inclusivity, accessibility and ethics.
The publication specifically acknowledges contributions from TEDDY KIDS Network (EYE YPAG London, KIDS Albania, KIDS ANDO, KIDS Bari, KIDS Kosova, KIDS Rare Hellas, KIDS Umbria, POLPEDNET Warsaw and RAiN Ireland, as well as Valentina Jalby member of the INVENTS Patient Expert Group (PEG)). The groups provided feedback on the draft recommendations and accompanying figures, considering their relevance, feasibility, inclusivity and approaches to meaningful participation, while young people also identified the checklist elements, they considered most important.
Donato Bonifazi, Chair of TEDDY Network and Coordinator of the TEDDY Working Group on Children Engagement and Advocacy, is a member of the IRDiRC Working Group on Young People Engagement and contributed to the publication as part of this international expert group. His contributions included formal analysis, validation, and review and editing of the manuscript.
Emanuela Crea, the scientific secretariat of TEDDY Network, as well as a member of the TEDDY Working Group on Children Engagement and Advocacy, is also acknowledged for her contribution to drafting and revising the manuscript.
The publication builds on ongoing efforts to ensure that the perspectives of children and young people are recognised as an integral part of paediatric research. TEDDY will continue to contribute to this field through its work with the TEDDY KIDS Network and its wider collaborations.
You can find more information on TEDDY Publications at the following LINK.