International Bureau for Epilepsy Launches New Global Policy Advocacy Report at the 79th World Health Assembly

The International Bureau for Epilepsy (IBE) officially launched a new Policy Advocacy Report at the 79th World Health Assembly in Geneva; bringing the voices, priorities, and lived experiences of people with epilepsy directly into global policy discussions.

The report, informed by findings from IBE’s landmark Global Epilepsy Needs Study (GENS), translates lived experience insights and global evidence into practical recommendations aimed at strengthening implementation of the World Health Organization's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022–2031.

The launch took place during a high-level side event at WHO Headquarters, co-organised by One Neurology and WHO Non-State Actors - including IBE, the Multiple Sclerosis International Federation (MSIF), and Alzheimer's Disease International (ADI) - with the generous support of the Italian Ministry of Health.

Speaking during the event, Donna Walsh, CEO of IBE, emphasised the importance of ensuring that global frameworks translate into meaningful improvements in everyday life. She explained that the study aimed to look beyond seizures alone to better understand the broader realities facing people with epilepsy worldwide.

GENS gathered nearly 5,300 survey responses and 75 in-depth interviews across multiple countries, exploring areas including healthcare, education, employment, transportation, safety, and social inclusion.

One of the strongest themes discussed during the event was the gap between policy commitments and everyday reality: “There is no point creating global frameworks unless they really address what matters most to those people living with neurological conditions across the world,” said Ms Walsh.

The report positions epilepsy not only as a health issue but also as a human rights, social inclusion and sustainable development issue.

The policy advocacy report outlines ten global policy priorities, as well as domain-specific recommendations, covering areas such as: strengthening human rights-based frameworks, increasing awareness of epilepsy and seizure first aid, developing national epilepsy plans and programmes, improving access to healthcare and medicines, providing integrated holistic care, driving research and innovation, creating epilepsy-friendly environments, ensuring meaningful lived experience involvement and supporting patient organisations.

Ms Walsh concluded by emphasising the importance of using the report as an implementation and advocacy tool moving forward: “We hope that this will be a critical evidence base to inform policymaking and decision-making,” she said, “Particularly when it comes to IGAP implementation globally.”

The GENS Policy Advocacy Report is intended to serve as a roadmap for governments, healthcare and research leaders, advocates, and civil society organisations working to improve the lives of people affected by epilepsy worldwide.

Download the GENS Policy Advocacy Report

Access the GENS Research Article