From fragmentation to collaboration in European brain research: The early history of the European Brain Council (EBC), an organization that changed our perspective of advocacy

The European Academy of Neurology (EAN) is a member of the European Brain Council (EBC), a coalition of neurologists, psychiatrists, neurosurgeons, neuroscientists, patient organizations and industry with an interest in the brain and its diseases. It was founded by the present author. Here, its formation, early history and the results of its advocacy are described. Eyewitness report and relevant literature were considered. After a long and difficult inception, the European Brain Council (EBC) brought all major players with an interest in the brain and its diseases to work closely together. Important data on the cost of brain diseases, lack of funding and fantastic research possibilities were generated and effectively used in advocacy. During the early years of the collaborative effort, the funding of brain research increased from €85 million in framework program (FP) 5 to €260 million in FP6 and to more than €2000 million in FP7. The EBC has been extremely successful. It is essential that advocacy in the European Union continues to be united so that those involved in brain research are able to speak with one voice to policy makers. An even bigger task, still insufficiently pursued, is for national brain councils to achieve prioritization of brain research in their national political agenda to bring about improved provision of care to those living with a brain disease.