The International Bureau for Epilepsy (IBE) will today launch a major new global policy advocacy report at the 78th World Health Assembly in Geneva, Switzerland, calling for urgent and coordinated international action to address the real-world needs, rights, and priorities of people living with epilepsy.
The report draws on findings from IBE’s landmark Global Epilepsy Needs Study (GENS), the organisation’s largest and most ambitious global research initiative to date. Developed through extensive global engagement with people living with epilepsy, carers, advocates, and healthcare professionals, GENS was designed to ensure that lived experience directly informs policy development, research priorities, and healthcare innovation.
Neurological disorders are now among the leading causes of disability and death worldwide, affecting more than three billion people globally. Yet despite this growing burden, neurological conditions continue to receive insufficient political attention and investment within many national and global health agendas.
Epilepsy alone affects more than 50 million people worldwide, making it one of the most common neurological conditions globally. Nearly 80% of people with epilepsy live in low- and middle-income countries, where access to timely diagnosis, treatment, specialist care, and social support remains significantly limited.
The launch of the report comes at a pivotal moment for global neurological health. The adoption of the World Health Organisation Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022–2031, alongside the 2025 Political Declaration from the UN High-Level Meeting on Noncommunicable Diseases, has created renewed international momentum to strengthen neurological care, equity, and policy implementation.
“This is a critical opportunity to bring the voices and priorities of people with epilepsy directly to policymakers from across the world,” said Donna Walsh, Chief Executive Officer of IBE. “As countries work to accelerate implementation of IGAP, it is essential that these efforts are grounded in the real experiences and unmet needs of people living with epilepsy and their families.”
The GENS report explores ten key areas shaping the lives of people with epilepsy, combining global data with insights from lived experience to identify priority gaps and opportunities for action. In addition to outlining the challenges faced by the epilepsy community, the report highlights emerging best practices and provides practical policy recommendations for governments, healthcare leaders, advocates, researchers, and civil society organisations.
IBE hopes the report will serve both as a roadmap for meaningful policy change and as a catalyst for stronger cross-sector collaboration to improve quality of life, reduce inequalities, and advance the human rights of people affected by epilepsy worldwide.
For more information and to download the report, visit: www.genspolicyadvocacy.org