The main purpose of Rare Disease Day is to raise awareness about rare diseases and their impact on the lives of those affected. Building on the European Brain Council’s (EBC) ongoing work on rare diseases, the Rare Brain Disease (RBD) Ecosystem was launched in 2025. This initiative aims to engage key stakeholders across Europe to identify gaps, set priorities, and foster collaborative projects, with a focus on strengthening the integration of research and healthcare. Placing brain health at the core of rare disease prevention and management, this event gathers multidisciplinary experts from research, clinical care, patient advocacy, and industry to share perspectives and priorities on the rare disease research, care, and policy space.

The meeting will review recent European project and regulatory developments and discuss practical strategies to advance the RBD Ecosystem and build a comprehensive Knowledge Hub. Experts will also explore how care and treatment pathways for Myasthenia Gravis (MG), Neurofibromatosis Type-1, and Childhood Dementia can be improved, drawing on both patient and clinician perspectives. Highlights include the launch of the Rethinking MG Advocacy Paper and the announcement of a new Neurofibromatosis Type 1 project.