Young people and ERDERA experts come together to shape the next training programme and future opportunities for youth participation in rare disease research
As part of the TEDDY General Assembly and Scientific Meeting 2026, taking place on 18 – 20 September 2026 at University of Bari, Italy, Piazza Cesare Battisti, 1, 70121 Bari BA.
TEDDY will host a dedicated planary session bringing together ERDERA partners and TEDDY Working group on Children Engagement and Advocacy to discuss the development of the 2027 ERDERA 3rd Edition Training for Young Rare Disease Patient Advocates and future opportunities for meaningful youth involvement across ERDERA, on 19 September 2026, from 16:00 – 17:30 at Leogrande Room.
The session will build on the experience and feedback from the first two editions of the ERDERA training programme, which have provided young people with opportunities to develop knowledge and skills related to research, advocacy and patient engagement.
The session will use a youth-centred co-design approach, giving young people an active role in shaping the content and direction of the 2027 training. Through a facilitated dialogue with ERDERA experts and other stakeholders, participants will reflect on what worked in previous editions, identify gaps and support needs, and explore meaningful opportunities for youth participation in ERDERA activities. The discussion will translate young people’s experiences and priorities into practical directions for the future training programme and participation pathways.
The session will highlight the importance of meaningful patient engagement in shaping research, training and participation opportunities, ensuring that the perspectives and experiences of young people affected by rare diseases are considered from the outset.
Explore the ERDERA training activities and previous editions:
Athens 2-3 May 2025, ERDERA – Young Patients Training
Paris 23-25 April 2026, 2nd ERDERA Training for Young Advocates for Rare Diseases
Participants interested in attending the TEDDY General Assembly and Scientific Meeting 2026 can register through the registration form below:
TEDDY General Assembly – Registration Form – Fill in form
Explore the TEDDY General Assembly and Scientific Meeting 2026