ERDERA is excited to announce a unique two-day, in-person training event in Athens, Greece, designed to empower young people living with a rare disease aged 12 to 18 years with essential knowledge and skills to actively contribute to paediatric clinical research.
Organised by TEDDY Network with the support of c4c-S, IMAGINE, and EURORDIS, this training from 2-3 May 2025, will provide tailored educational content in English. The materials, including youth-friendly resources, videos, serious games, webinars, and podcasts, will be developed with a participatory approach and made available for translation into national languages.
Training topics
- Rare and genetic diseases specificities – Understanding the unique challenges of rare and genetic conditions in paediatric patients.
- Patients’ and children’s rights – Ethical considerations and legal protections in research.
- Clinical and translational research challenges – Ethical and legal aspects of paediatric research and the role of young patients.
- Patient engagement in clinical trials – Involvement in trials, consent/assent issues, innovative methodologies (PROMs, PREMs), and the role of lay summaries.
- Orphan Medicinal Products in paediatrics – Availability and access in the EU, pharmacovigilance, and off-label use in paediatric settings.
What to expect in this training
- Pre-training assessment – Selected participants will complete an online test to assess their knowledge and interests, ensuring a personalised learning experience.
- Interactive sessions & play-to-learn activities – Led by paediatricians, researchers, psychologists, patient representatives, Young Persons Advisory Group facilitators, and ethical/regulatory experts.
- Engagement in research – Develop skills to actively contribute to research projects, improve communication with stakeholders, and help shape future studies.
- Future opportunities – Trained participants will be invited to take part in upcoming ERDERA activities and collaborations with European foundations.
How to apply
This opportunity is open exclusively to young patients with rare diseases aged 12 to 18 years who are eager to learn about research and healthcare.
If you are interested in participating, simply fill out this registration form.
Application deadline: 12 April 2025
Check out the agenda for the two days here.
Join us in Athens to expand your knowledge and become an active voice in paediatric research!
