Empowering Young Voices in Rare Disease Research
On May 2nd and 3rd, the ERDERA Young Patients Training was held in Athens at the Hotel Stratos Vassilikos, Olympia Room, organized by the TEDDY Network in collaboration with Rare Diseases Greece and with the support of KRIKOS ZOIS.
In the framework of the European Rare Disease Research Alliance – ERDERA project (ERDERA website), the Young Patient Training is provided in Work Package 20 – Subtask 20.1.2, coordinated by TEDDY, the European Network of Excellence for Pediatric Research (TEDDY website), and partners c4c-S, IMAGINE and EURORDIS, with the aim to equip children and young people with the knowledge and skills needed to engage meaningfully in biomedical research, particularly in the context of paediatric rare diseases.
The ERDERA Young Patients Training was exciting!
Children and young people from seven Young Persons’ Advisory Groups (YPAGs) ANDO Portugal, eyeYPAG London, KIDS Albania, KIDS Bari, KIDS Rare Hellas, KIDS Umbria and RAiN Ireland actively participated in the ERDERA Young Patients Training designed to involve them directly in scientific research.
Besides the strong participation of children and young people, there was a rich and interactive dialogue between health experts and caregivers. Together, they explored key topics such as Rare and Genetic Diseases Specificities, Patients’ and Children’s Rights, Translational Research Challenges, Patient Engagement in Clinical Trials, Orphan Medicinal Products & Pharmacovigilance, making the event meaningful and inspiring.
Children and young people played a central role in the ERDERA Young Patients Training, by sharing their personal experience and that of their YPAGs during dedicated sessions. The voices of children and young people brought authenticity, emotion and a new perspective to the discussions, emphasizing the importance of listening to the younger generation to shape a more inclusive approach to biomedical research.
All sessions were carefully designed to be age-appropriate and engaging, supporting their understanding of how they can play an important role in biomedical research.
You can find the ERDERA Young Patients Training agenda HERE.
Educating young people is essential for incorporating their voices into research and drug development process, communicating unmet priorities to stakeholders, and enabling them to participate in decisions regarding their health.
