ERDERA Young Advocates Training Begins in Paris, 23-04-2026
The second edition of the ERDERA Training for Young Advocates for Rare Diseases officially opened on 23 April 2026 at Institut Imagine, Paris, bringing together young advocates from across Europe for three days of learning, exchange, and engagement in rare disease research. Organised within the framework of the European Rare Diseases Research Alliance (ERDERA), the initiative is led by Institut Imagine in collaboration with TEDDY Network, EURORDIS-Rare Diseases Europe, and supported by conect4children-S.
The opening session welcomed participants and introduced the objectives of the training programme.
• Welcome and Introduction to the ERDERA Training – Amalia Stantzou on behalf of Rima Nabbout (Institut Imagine), Donato Bonifazi (TEDDY Network), and Barbara Alfandari (Institut Imagine)
• Introduction from the KIDS Groups
• The Role of Advocacy and Patient Organizations – Gemma Rodriguez (EURORDIS)
• Drug Development Introduction: From Research to Medicine – Cécile Déal (Institut Imagine)
During the session dedicated to the KIDS groups, the young participants introduced themselves and presented their respective Young Persons Advisory Groups (YPAGs) and patient organisations. Representatives included KIDS Bari (Italy), KIDS Albania, KIDS Kosova, POLPEDNET KIDS Warsaw (Poland), KIDS Rare Hellas (Greece), eyeYPAG (European Young Persons Advisory Group for Eye Diseases), ANDO Portugal (Associação Nacional de Doenças Ósseas, Portugal), ADEE (Asociación de Displasia Ectodérmica de España), INVENTS PEG (Patient Expert Group of the INVENTS Project), AEV ODV (Associazione Estrofia Vescicale Epispadia Onlus – Organizzazione di Volontariato, Italy), RAiN Ireland (All Ireland Rare Diseases Interdisciplinary Research Network), SMA Georgia (Spinal Muscular Atrophy Patient Community, Georgia), Pro Rare Austria (Alliance for Rare Diseases Austria), and APPDH (Associação Portuguesa para a Perturbação do Desenvolvimento e Hiperatividade, Portugal). Their presentations highlighted the importance of peer exchange, patient representation, and youth engagement in shaping future research priorities.
The first day concluded with a guided visit of Institut Imagine, giving attendees the opportunity to discover one of Europe’s leading centres for genetic research and innovative paediatric care.
Coordinating the involvement of children and young patients in this initiative, the TEDDY Network continues to support the development of informed and empowered young patient advocates whose voices are essential to the future of rare disease research in Europe.