The International Bureau for Epilepsy (IBE) has unveiled a new global Policy Advocacy Report at the 79th World Health Assembly in Geneva, marking an important step in bringing the lived experience of people with epilepsy closer to global policymaking.
The report builds on insights from IBE’s Global Epilepsy Needs Study (GENS), translating patient-reported experiences into a set of practical recommendations aimed at accelerating implementation of the World Health Organization’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022–2031.
Presented during a high-level side event at WHO Headquarters, the launch brought together a broad coalition of stakeholders, including OneNeurology partners such as the Multiple Sclerosis International Federation (MSIF) and Alzheimer’s Disease International (ADI), highlighting the growing momentum behind coordinated global action in neurology.
A central theme of the report is the need to bridge the disconnect between policy ambitions and the everyday realities faced by people living with epilepsy. Drawing on nearly 5,300 survey responses and 75 in-depth interviews across multiple countries, GENS captures a wide range of challenges extending well beyond clinical care—spanning access to healthcare, education, employment, transportation, and social participation.
Speaking at the launch, IBE CEO Donna Walsh stressed that focusing exclusively on seizure control provides an incomplete picture. Instead, she emphasised the importance of addressing the broader social and structural barriers that continue to impact quality of life.
The report positions epilepsy firmly within a wider societal context, framing it not only as a health condition but also as a matter of human rights, social inclusion, and sustainable development. It outlines ten global policy priorities and a series of targeted recommendations, including strengthening rights-based approaches, improving access to care and medicines, supporting research and innovation, and ensuring meaningful involvement of people with lived experience.
Designed as both an advocacy and implementation tool, the report aims to support governments, healthcare leaders, and civil society organisations in translating global commitments into measurable improvements for people affected by epilepsy.
Read the report here: GENS — Global Epilepsy Needs Study | Policy & Advocacy Report
