The European Brain Council (EBC), in collaboration with Neurofibromatosis Patients United (NFPU), is pleased to launch the 'Rethinking Neurofibromatosis Type 1' project on the occasion of EBC's Rare Disease Day event, held on February 24th, 2026 in Brussels. Neurofibromatosis is a rare genetic disease, that includes three different diseases that affect over 250,000 people [...]
The European Brain Council (EBC), in collaboration with the Institute of Management of Scuola Superiore de Sant'Anna, is pleased to launch the 'Rethinking Myasthenia Gravis' Advocacy Paper on the occasion of EBC's Rare Disease Day event, held on February 24th, 2026 in Brussels. Rethinking Myasthenia Gravis (MG) is a research-driven project that will offer [...]
24 February 2026 Rare Disease Day 2026 Advancing the Rare Brain Disease Ecosystem This event will take place at BlankSpace Place du Luxembourg, Rue d'Arlon 80, 1040, Brussels, Belgium. The main purpose of Rare Disease Day is to raise awareness about rare diseases and their [...]
27 - 29 October 2025 Amsterdam, The Netherlands World Orphan Drug Congress 2025 Strategy, Advocacy & Partnering For The Global Orphan Drug Industry The World's Largest Rare Disease Event The World Orphan Drug Congress is the largest and most established orphan drug & rare disease [...]
In the context of the 78th World Health Assembly (WHA) being held in Geneva on 19–27 May 2025, the European Brain Council (EBC) fully supports the Resolution on Rare Diseases: ‘Rare Diseases: A Global Health Priority for Equity and Inclusion’. Spearheaded by Rare Diseases International and a broad coalition of partners, this initiative acknowledges [...]
On February 28, marking the 2025 Rare Disease Day, the European Parliament’s Public Health Committee (SANT) kicked off its survey on rare diseases. The purpose of this public consultation is to provide a basis for the forthcoming work of the Committee in bringing a better understanding of the challenges of persons affected by rare diseases and views of [...]
The European Brain Council (EBC), in collaboration with the Institute of Management of Scuola Superiore de Sant'Anna, was very pleased to launch the 'Rethinking Myasthenia Gravis' project on the occasion of EBC's Rare Disease Day event, held on February 20th in Brussels. Rethinking Myasthenia Gravis (MG) is a research-driven project that will offer policy [...]
Towards A Rare Brain Disease Ecosystem Rare Disease Day 2025 | 'More than you can imagine' The Rare Disease Day event 2025, organised by the European Brain Council (EBC), was held on February 20, 2025. The event gathered researchers, clinicians, policymakers, industry representatives and patient advocacy groups to address [...]
On the International Phenylketonuria Day 2024, the European Brain Council (EBC) is pleased to publish the 'The Value of Education: Digital Care Pathways for Rare Brain Diseases. The Case of Phenylketonuria (PKU)' study insights. About Phenylketonuria Rare diseases typically display a high level of symptom complexity and variability. Individuals diagnosed with [...]
On the occasion of Rare Disease Day, 29 February 2024, the European Brain Council (EBC) held the event Towards a Rare Brain Disease Ecosystem at the University Foundation, Brussels, to raise awareness on rare brain diseases and their societal impact. The event brought together researchers, clinicians, persons living with a rare brain disease and industry to [...]
