The main purpose of Rare Disease Day is to raise awareness about rare diseases and their impact on the lives of those affected. In the continuity of the European Brain Council’s (EBC) activities on rare brain diseases, EBC introduced in 2024 the concept of a Rare Brain Disease Ecosystem to engage key stakeholders in the field to identify gaps, priorities, and projects in Europe. During this event, the Rethinking Myasthenia Gravis (MG) project will be launched. Researchers, clinicians, persons living with brain disease and industry will share their perspectives and priorities in the rare brain disease research, care, and policy space, and will brainstorm on how care and treatment pathways for rare brain diseases such as MG, Neurofibromatosis Type 1 and Rare Epilepsy can be optimised from both the patient and clinician perspectives. It will be also the opportunity to further discuss the objectives and value add of the proposed EBC Rare Brain Disease Ecosystem & Knowledge Hub.

Practical information

Date: Thursday, 20 February 2025
Time: 09:30 – 14:00 (Brussels time)
Location: University Foundation (Room A), Rue d’Egmont 11, 1000 Brussels, Belgium

All participants must register before attending this event.