Are you a young patient living with a rare disease and interested in healthcare and research? Join us at Institut Imagine to expand your knowledge, share your perspective and become an active voice in paediatric research.

Following a successful first edition in Athens in 2025, the ERDERA alliance is pleased to invite paediatric patients aged 12 to 21 to participate in a three-day in-person training event at Institut Imagine, in Paris, a leading center for research and innovative care in rare and genetic diseases.

The training will begin at 3:00 pm on 23 April and conclude at 3:00 pm on April 25^th, 2026.

This training aims to empower young patients by providing them with the knowledge, confidence and skills needed to actively take part in paediatric and rare disease research.

Organized by Institut Imagine with TEDDY European Network of Excellence for Paediatric Clinical Research and EURORDIS Rare Disease Europe with the support of conect4children Stichting, the training will offer tailored educational content delivered in English.

How to apply? Complete the registration form before march 8, 2026

What can you expect?

• Pre-training assessment: selected participants will complete an online questionnaire to assess their knowledge and interests, ensuring a personalized learning experience.
• Interactive sessions led by paediatricians, researchers, patient representatives and ethical and regulatory experts.
• Active engagement in research: learn how to contribute to research projects, improve communication with researchers and other stakeholders, and help shape future studies.
• Future opportunities: engage as a young patient expert and participate in the future to different initiatives calling for patient experts

Who can apply?

This current opportunity is primarily open to European young patients aged 12 to 21 years living with a rare disease who are motivated to learn more about healthcare and research.

Training topics:

• Rare and genetic diseases: specific challenges in paediatric care
• Understanding clinical trials, study protocols, and pharmacovigilance
• Introduction to patient registries and orphan medicinal products in paediatrics
• Clinical and translational research challenges and the role of young patients in research
• Patient engagement in clinical trials, including consent and assent, innovative methodologies (PROMs, PREMs), and lay summaries
• Patients’ and children’s rights: ethical and legal considerations