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: Christina Ramirez shares her lived experience of gMG and its profound daily impacts on patients and families.
🔹 The research lens: Adrian Kielhorn presents findings from the gMG 360 study – revealing, for instance, that 2/3 of the disease's economic impact falls on patients and caregivers – a burden largely invisible to traditional healthcare assessments.
🔹 The policy perspective: Vinciane Quoidbach from the European Brain Council discusses the "Rethinking Myasthenia Gravis" project and how adaptive pathways, real-world evidence and patient-experienced data can transform care for rare brain diseases.Â
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.
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