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. Attendees 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. This event will also provide the opportunity to further develop on the objectives and mission of the proposed EBC Rare Brain Disease Ecosystem & Knowledge Hub. Registration closes 13 February!
