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 [...]
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 [...]
The 12th European Conference on Rare Diseases & Orphan Products (ECRD) is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future. With over [...]
On 7 December 2022 at 16:00-17:30, the European Alliance for Patient Access (EAfPA), with support of the European Brain Council (EBC) and European Federation of Neurological Associations (EFNA), hosted an event in the European Parliament on Rare Neurological Diseases in the EU, exploring the importance of early diagnosis and real-world evidence (RWE) to drive better [...]
The Value of Treatment (VOT) research project, initiated and coordinated by EBC, aims to identify treatment gaps and causing factors along the care pathway and propose solutions to address them; assess health gains and socio-economic impacts resulting from best practice healthcare interventions, in comparison with current care or no treatment. Furthermore, its objective is to [...]
The European Brain Council and beLean.net are excited to announce 'Save the Date' for the upcoming Brain Innovation Days, to be held in Brussels on 13-14 October and virtually all over Europe. The Brain Innovation Days will take over from EBC's 2018 event on "Enhanced engagement in public-private partnerships" and provide an opportunity to not [...]
The Value of Treatment (VoT) project, a 2-year study initiated by the European Brain Council (EBC) in 2018, has been highlighted in the European Reference Network for Rare Diseases (ERN) Newsletter that is sent on a quarterly basis by the Directorate-General for Health & Food Safety of the European Commission. According to the European Reference Network on Rare Neurological Diseases (ERN-RND), there are 500,000 people living with rare [...]
On 15 May 2019, a joint meeting was held in Brussels for the new case studies of the 2nd round of the EBC Value of Treatment project. Working groups in the fields of Mental Disorders: Eating Disorders (Anorexia Nervosa), Major Depressive Disorder and Autism Spectrum Disorder* and Rare Neurological Disorders: Ataxia, Dystonia and Phenylketonuria (PKU) have [...]
On 12 July 2017, the meeting of the MEP Interest Group on Brain, Mind and Pain, and the Interest Group on Mental Health, Well-being and Brain Disorders took place in the European Parliament (Brussels) in partnership with EBC. The event was hosted by MEPs Jana Žitňanská, Marian Harkin, Michał Boni and Marek Plura. The well-attended and [...]
