The latest episode of Brain Talks examines what it really means to live with Myasthenia Gravis, and what needs to change to better support patients across Europe. Host Sam Pauly is joined by Lutgarde Allard (European Myasthenia Gravis Association) and Dr Lorenzo Maggi (Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan), to discuss the patient experience, clinical realities and policy ambitions behind the European Brain Council’s Rethinking MG initiative.

The episode explores the profound and often invisible burden of MG on patients, families and carers, from anxiety, isolation and guilt through to financial hardship. On the clinical side, the discussion highlights how delayed diagnosis, uneven access to innovative therapies and fragmented care coordination continue to hold patients back, with the core challenge being not a lack of medical knowledge, but the difficulty in translating that knowledge into timely and coordinated care across Europe.

Key themes include the urgent need for structured, patient-centred care pathways, the critical importance of meaningful patient and carer involvement in shaping health policy, and the growing role of European Reference Networks in reducing inequalities and sharing best practice across borders. The episode also looks ahead with optimism, exploring the impact of new targeted therapies and the potential for MG to serve as a model for how rare neurological diseases are addressed more systematically across Europe.

Released ahead of Rare Disease Day and in connection with the European Brain Council’s Rare Brain Disease event in Brussels, this episode makes a compelling case for putting patients at the heart of care, research and policy.