International League Against Epilepsy

The International League Against Epilepsy supports recognizing rare diseases as a global health priority to advance equity. Rare epilepsies and developmental epileptic encephalopathies often begin early, driving mortality, disability, stigma, and lifelong socioeconomic burden. Inequities persist in access to genetic diagnosis, newborn screening, specialized care, essential medicines, and emerging precision therapies, especially in low and middle-income countries. Building on collaborative models like ILAE Europe and ERN EpiCARE, Member States should integrate rare epilepsies into national rare disease and universal health coverage strategies, expand diagnostics and multidisciplinary care, promote international research and data sharing, and ensure equitable access to innovation.