As coordinator of the OrphaDev4Kids project, EPTRI took part in the OrphaDev4Kids Patient Expert Committee (PEC) parallel session part of the TEDDY General Assembly and Scientific Meeting 2026 held in 18–20 September, organised by the TEDDY European Network of Excellence for Paediatric Clinical Research. The session titled “Evaluation of Paediatric and Orphan Medical Devices Innovative Projects with Experts and PEC Members” brought the perspectives of young patient experts into the evaluation of innovative paediatric and orphan medical device projects.
Patient perspectives in the evaluation process
The session was linked to OrphaDev4Kids’ WP2, which manages access to and delivery of the services requests. Once a service request has been submitted and assessed for feasibility, dedicated experts support the development of the proposed paediatric or orphan medical device. The PEC session added a patient-centred step to this process.
PEC members reviewed service requests received by the project and gave feedback on the proposed device solutions. They considered clinical relevance, feasibility, accessibility, usability and acceptability. The discussion also focused on the needs, expectations and potential challenges of patients not fully captured by technical and clinical assessments alone.
About OrphaDev4Kids and the Patient Expert Committee
OrphaDev4Kids (EU4H-2023-PJ, Grant Agreement No. 101161377) is a EU4Health co-funded initiative running from 2024 to 2027. The project addresses unmet needs in orphan medical devices for paediatric patients through multidisciplinary research and innovation across Europe. The TEDDY Network contributes its expertise in ethical and legal aspects. It also established and coordinates the Patient Expert Committee, which brings together young participants from the TEDDY KIDS Network, including Young Persons Advisory Groups (YPAGs) across Europe.
Looking ahead
The session showed in practice how meaningful patient involvement can lead to more relevant, accessible and patient-centred medical devices for children and young people living with rare and paediatric conditions. EPTRI thanks TEDDY for hosting the session, and thanks the PEC members and experts who took part.