Young advocates met in Paris from 23–25 April 2026 for the second ERDERA Training for Young Advocates for Rare Diseases, focused on advocacy, clinical research, patient rights and partnership in paediatric rare disease research.
Two expert‑led facilitation windows linked to EJPRD‑developed MOOCs, give learners the opportunity to engage directly with specialists in health data governance and translational research for rare diseases.
The training responds to the growing need for patient advocates to understand data management, ethical considerations and the role of AI in rare disease research.
Amsterdam and online, convening clinicians, scientists and advocates to share progress and the power of patient led policy to improve diagnosis and care.
