
Advancing the Rare Brain Disease Ecosystem
24.02.2026 @ 09:30 - 16:00

24 February 2026
Rare Disease Day 2026
Advancing the Rare Brain Disease Ecosystem

This event will take place in Brussels, Belgium.
More details on the programme details coming soon.
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 brain 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 brain 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 brain disease research, care, and policy space. The meeting will focus on reviewing key developments in regulatory frameworks and discussing strategies to advance the RBD Ecosystem and develop a comprehensive Knowledge Hub. Moreover, experts will explore how care and treatment pathways for diseases such as Myasthenia Gravis (MG), Neurofibromatosis Type 1, and Childhood Dementia can be improved from both the patient and clinician perspectives. Key highlights include the launch of the Rethinking MG Advocacy Paper and the announcement of a new project on Neurofibromatosis Type 1.
