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Listen to our new Brain Talks episode! Beyond traditional metrics: Rethinking disease burden in myasthenia gravis

Listen to the newest Brain Talks episode on rethinking the way we look at disease burden, featuring perspectives from patients, researchers, and policy experts on what it truly means to live with generalised Myasthenia Gravis (gMG). This episode tackles a critical question: Are we truly capturing what rare brain diseases cost patients, families and society?

In this episode, host Sam Pauly explores: The patient reality with Christina Ramirez, who shares her lived experience of gMG and its profound daily impacts on patients and families, the research lens with Adrian Kielhorn, who presents findings from the gMG 360 study, and the policy perspective with Vinciane Quoidbach, who discusses the “Rethinking Myasthenia Gravis” project and how adaptive pathways, real-world evidence, and patient-experienced data can transform care for rare brain diseases. With innovative therapies emerging and policy frameworks evolving, now is the moment to redesign care pathways that reduce burden, accelerate access and ensure no gMG patient is left behind.