The Global Epilepsy Needs Study (GENS) is the largest mixed-methods exploration of the psychosocial and everyday needs of people living with epilepsy — beyond seizures. Read the Policy Advocacy Report.
Epilepsy research has long focused on seizures and clinical outcomes. GENS widens the lens — capturing the psychosocial, emotional, practical, and societal impacts of living with the condition.
The Global Epilepsy Needs Study was developed to better understand the real-life experiences, challenges, and unmet needs of people living with epilepsy around the world.
Grounded in lived experience and shaped through global collaboration, GENS aims to inform more person-centred care, stronger advocacy, improved support services, and policies that reflect the realities of everyday life with epilepsy.
The Policy Advocacy Report distils these findings into ten actionable, cross-cutting recommendations for policy-makers, aligned with the WHO Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP).
Epilepsy is the world's most common serious chronic neurological condition — yet the lived realities of more than 50 million people remain under-measured in global health policy.
Co-designed with people living with epilepsy, clinicians, and researchers across six WHO regions — the most ambitious research undertaking in IBE's history.
GENS asks about the parts of life most often left out of clinical conversations. Each domain is examined through both survey data and lived-experience interviews.
Thematic analysis of 75 interviews, combined with survey data, surfaced five overarching themes that recur across the lived experience of epilepsy worldwide.
Global recommendations to be adapted to local contexts — aligned with WHO IGAP targets and broader UN frameworks on sustainable development, NCDs, and human rights.
Country-specific reports accompany the global findings. To request access to country-level raw data, contact the GENS team.
GENS was led by IBE in partnership with research partners MediPaCe, members of IBE's Community Council, regional committees, and national epilepsy organisations across six WHO regions.
More than 70 contributors across 15 countries helped shape GENS through fieldwork, translation, analysis, review, advocacy, editorial review, and design.
The GENS Policy Advocacy Report turns the voices of 5,296 survey respondents and 75 interviewees into ten clear actions for policy-makers worldwide. Free to download, translate, and share.
Press, partnerships, country-data requests, or general enquiries about the Global Epilepsy Needs Study and the Policy Advocacy Report.
MediPaCe partnered with the International Bureau for Epilepsy (IBE) to support the design, coordination, and delivery of the Global Epilepsy Needs Study (GENS). As the study's research partner, MediPaCe worked alongside researchers, healthcare professionals, patient organisations, and people with lived experience to help ensure the project reflected the real-world experiences and priorities of the global epilepsy community.
GENS would not have been possible without the generous support of our funding partners, whose commitment makes person-centred epilepsy research a reality.
