Day 3 Highlights Young Patients as Partners in Research, Advocacy Empowerment, and Key Learnings, 25-04-2026
The third and final day of the 2nd ERDERA Training for Young Advocates for Rare Diseases took place on 25 April 2026 at Institut Imagine, began with a session on patient registries and study methodologies, delivered by Nicole Chemaly (AP-HP). Participants were introduced to the role of patient registries in research and explored the differences between retrospective and prospective studies through practical case discussion.
This was followed by an important session on patients’ and children’s rights, led by Annagrazia Altavilla (Espace Éthique PACA-Corse, AP-HM) , Leonardo Fiore (KIDS Bari), and Eirini Daskalopoulou (KRIKOS ZOIS). The discussion highlighted ethical principles, protection of minors in research, and the importance of respecting the rights and voices of children and young patients.
The programme continued with Clinical Trials and How Young Patients Shape Research – Advocate Empowerment, bringing together Yanis Mimouni (C-Path), Donato Bonifazi (TEDDY Network), Nicole Chemaly (AP-HP), and Mark Turner (connect4children).
A key highlight of the final day was the interactive working session: Young Patients as Partners in Research, facilitated by Yanis Mimouni, Donato Bonifazi, Nicole Chemaly, and Mark Turner. Participants were divided into three separate groups with the aim of co-developing paediatric study designs. Through this practical exercise, the young participants worked alongside experts in paediatric research, actively contributing their perspectives, needs, and ideas on research priorities and study strategies. The session concluded with a plenary feedback and wrap-up discussion, during which a representative from each group, selected by the young participants, presented the key ideas and recommendations that had emerged from their discussions.
The closing session opened with Key Learnings, presented by Emanuela Crea (TEDDY Network), with the active involvement of the young participants. This session offered a valuable space for reflection, allowing everyone to look back on their experiences and openly share their perspectives and expectations for the future.
The training concluded with closing remarks from Rima Nabbout (Institut Imagine) and Donato Bonifazi (TEDDY Network), who thanked participants, speakers, and partner organisations for their engagement and commitment throughout the three-day programme.
Through this successful second edition, TEDDY Network reaffirms its commitment to empowering the next generation of young patient advocates and ensuring that their voices continue to shape the future of paediatric rare disease research in Europe.