ERDERA opens call for young rare disease advocates to join training in Paris
The TEDDY- European Network of Excellence for Paediatric Clinical Research is proud to announce the second edition of the young advocates’ training organised under the framework of the European Rare Diseases Research Alliance (ERDERA). Following the strong impact of the first edition held in Athens in 2025, this year’s three-day in-person training will take place at Institut Imagine in Paris, a leading centre for genetic research and innovative paediatric care. The training will begin at 3:00 pm on 23 April and conclude at 3:00 pm on April 25th, 2026.
TEDDY’s contribution to the ERDERA project
Within the framework of the ERDERA project, TEDDY plays a key role under Work Package 20 – Subtask 20.1.2, as a partner alongside IMAGINE, and EURORDIS, and supported by conect4children-S, with the aim of equipping young people with the knowledge and skills to understand and actively contribute to research on paediatric rare diseases.
Through an interactive and inclusive approach, TEDDY fostered dialogue among young participants, researchers, and healthcare professionals, promoting awareness of patients’ rights and highlighting the importance of involving young people in clinical research.
A collaborative effort to empower future patient experts
The training is organised by Institut Imagine in close collaboration with TEDDY and EURORDIS-Rare Diseases Europe, with support from conect4children. This collaborative effort aligns with ERDERA’s mission to foster patient involvement and education as core pillars of rare disease research.
Through interactive sessions led by paediatricians, researchers, patient representatives, and regulatory experts, participants will explore:
- The specific challenges of paediatric care in genetic and rare diseases
- The fundamentals of clinical trials and study protocols
- Patient registries and orphan medicinal products
- Ethical and legal aspects of children’s rights, consent, and assent
To ensure a meaningful learning experience, selected participants will complete a pre-training assessment that allows the faculty to tailor sessions to their knowledge level and interests.
Practical information and application process
The training will take place from 23 to 25 April 2026 at Institute Imagine in Paris (24 boulevard du Montparnasse). Sessions will begin at 15:00 CET on 23 April 2026 and conclude at 15:00 CET on 25 April 2026. The training will be conducted in English.
The call is primarily open to young European patients aged 12 to 21 living with a rare disease who are motivated to deepen their understanding of healthcare and research and to become active contributors to future international initiatives.
Applications must be submitted via the online registration form by 8 March 2026. Further details regarding the full three-day training and the application process are available here.
Through this initiative, TEDDY reaffirms its dedication to empowering the next generation of patient experts and ensuring that young voices meaningfully shape the future of paediatric rare disease research in Europe.