Working Together to Improve Paediatric Orphan Medical Devices
On 15 March 2025, the kick-off meeting of the Patient Expert Committee (PEC) of the European project OrphaDev4kids was held in the Poeti Hall of the Hercolani Palace at the University of Bologna.
The event was organized in a hybrid format, allowing active participation both in-person and online, and fostering open dialogue on the development of orphan medical devices (MDs) for the paediatric population among children, families, researchers, and healthcare experts.
The meeting opened with a presentation by Emilia Biffi, titled “Development of Paediatric Medical Devices: Identifying and Gathering User Needs”, with a particular focus on MDs for paediatric rare diseases. This was followed by a presentation from Roberta Nossa, who introduced the Survey on Cyanotic Congenital Heart Disease (CCHD) for patients. The survey aims to support the design of a wearable biosensor that will improve the quality of life for children living with CCHD.
TEDDY Network has formed the PEC, comprising KIDS Albania, KIDS Bari, KIDS Umbria, KIDS Kosova, KIDS Rare Hellas, POLPEDNET KIDS Warsaw, Eye YPAG London and RAiN Ireland.
The KIDS presentation session was opened by Aleksander Wiśniewski, who discussed “Enhancing Clinical Studies through Young Patients’ Involvement” in Poland. The TEDDY KIDS then showcased their ongoing activities in the field of rare pediatric diseases, with the intention of fostering a deeper and more transparent understanding of these conditions and raising awareness in society.
The PEC of the OrphaDev4kids project played an active role in reviewing the CCHD patient survey. The survey was drafted as part of Work Package 3 of the OrphaDev4Kids project. Before finalizing and distributing the survey, a preliminary version was shared with the project’s PEC during the dedicated session to collect feedback and suggestions. The objective was to ensure that, from the very design of the questions, the survey would reflect the perspectives of patients and young people.
The purpose of the kick-off meeting was to create a space for the exchange of ideas between young patients and stakeholders, with the aim to create more effective solutions for the development of medical devices.
This collaboration was essential to empower young patients’ health rights and to ensure that future medical technologies are truly designed with their needs in mind.
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