Registration is now open for the hybrid event ‘Towards a Rare Brain Disease Ecosystem‘, set to take place 29 February 2024 at 10:00-14:00 at the University Foundtion in Brussels and online.

The main purpose of Rare Disease Day is to raise awareness about rare diseases and their impact on the lives of those affected. It is the globally-coordinated movement, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Encouraging policy changes can influence policymakers to create policies and regulations that better address the needs of people with rare diseases, including improved access to diagnosis and treatment. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.

To raise awareness on rare brain disease, this hybrid event, organised by the European Brain Council, will bring together researchers, clinicians, persons living with brain disease and industry to share their perspectives and priorities in the rare brain disease research, care, and policy space. This will result in the 2024 strategic plan for the EBC rare brain disease ecosystem.