The first Centre dedicated to enhancing global epilepsy research and care was launched at Wolfson College University of Oxford, UK in January this year. The launch event brought together leading researchers and clinicians from Africa, South America, the United States and Europe, demonstrating a collective commitment to addressing epilepsy as a global health challenge. 

The Centre for Global Epilepsy, established with support from the BAND Foundation, exists to drive improvements in global epilepsy, particularly in resource-limited settings. By fostering international collaborations, The Centre will connect expertise from high-income healthcare systems with under-resourced regions to drive advancements in epilepsy research, diagnosis and treatment. Aligned with the World Health Organization’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders, the Centre will facilitate research opportunities in Oxford and beyond, serving as a hub for multidisciplinary knowledge exchange. 

The global burden of epilepsy is substantial. Epilepsy affects more than 50 million people worldwide, with 10 million individuals affected in Africa alone [1-3]. Higher exposure to perinatal risk factors, infections and traumatic brain injuries results in much higher incidence rates in low to middle income countries (LMICs) compared to high-income settings. This disparity is likely to grow given that epilepsy becomes more prevalent with increasing age and populations in Africa are ageing much more rapidly than those in western countries [4]. 

While seizures can impact anyone, the burden of epilepsy is far greater in resource-limited settings. Seizures near rivers or fires can lead to drowning or life-altering burns. Compounding these dangers, epilepsy is deeply stigmatised in many communities where it is often misunderstood as possession or retribution. This stigmatisation can lead to discrimination in employment, education and social interactions [4,5]. Despite being a very treatable condition, most people with epilepsy in Africa lack access to diagnosis and treatment, with only one in ten able to obtain affordable anti-seizure medications regularly. Barriers include financial constraints, limited availability of anti-seizure medications and a shortage of trained healthcare professionals [5].  

During the launch event we heard from several distinguished speakers. Sir Tim Hitchens, President of Wolfson College, welcomed everyone to the event. Professor Arjune Sen, Chief Executive and Professor of Global Epilepsy at the University of Oxford, formally opened the Centre, outlining its objectives to build international research networks, provide capacity-building initiatives (such as Visiting Fellowships) and develop novel diagnostic and treatment approaches. The Centre will also play a pivotal role in curating data, fostering collaborations and advancing epilepsy research and care. 

A distinctive feature of the Centre’s work is its integration of humanities and historical research, to gain deeper insights into the lived experiences of those with epilepsy. This in turn allows development of scalable, culturally contextualised technologies. Core to the Centre’s mission is its commitment to equitable partnerships with affected communities, challenging stigma and advocating for greater public awareness and understanding. 

The launch event also featured a screening of The Curse of Stigma, introduced by Executive Producer Gardiner Lapham of the BAND Foundation. This film offered powerful insights into the lived experiences of epilepsy. Following the screening, Taurai Kadzviti of the Epilepsy Support Foundation Zimbabwe and Neurologist Dr Gift Ngwende from the University of Zimbabwe shared their perspectives, further highlighting the challenges and opportunities in epilepsy care. 

Professor Helen Cross, President of the International League Against Epilepsy, highlighted the potential impact of the WHO’s Global Action Plan in improving epilepsy care worldwide. Researchers from the University of Oxford, including Professors Charles Newton (University of Oxford/KEMRI-Wellcome, Kenya), Kevin Marsh (Africa Oxford Initiative), and Trudie Lang (The Global Health Network), presented pioneering research initiatives focused on epilepsy and global health, showcasing the ecosystem which the Centre will integrate into. 

The establishment of the Centre for Global Epilepsy represents a major milestone in the global effort towards reducing global disparities in epilepsy care. By fostering innovation and international collaboration, the Centre will drive improvements in clinical outcomes and quality of life for people living with epilepsy worldwide. 

Professor Arjune Sen, Chief Executive of the Centre for Global Epilepsy said, “It was wonderful to have so many colleagues and friends here with us tonight, including Rachael and Anna from ACNR! The energy surrounding the launch has been incredible and we now want to turn that momentum into tangible deliverables. We have a huge opportunity, just at this moment, to make a positive paradigm shift in epilepsy care across the world. I hope that many of you will wish to join us!” 

You can follow the Centre for Global Epilepsy on LinkedIn here or visit their website here. 

Join our online community at forums.acnr.co.uk

References 

  1. Epilepsy Foundation (2024) – What is epilepsy? (https://www.epilepsy.com/what-is-epilepsy   
  2. WHO (2019) – Epilepsy a public health imperative (https://www.who.int/publications-detail-redirect/epilepsy-a-public-health-imperative)   
  3. Beghi E. (2020) The epidemiology of epilepsy. Neuroepidemiology. 54:185-191. https://doi.org/10.1159/000503831 
  4. Sen et al., Epilepsy in older people. Lancet. 398(10311):1563 . https://doi.org/10.1016/S0140-6736(21)02224-8 
  5. United States Census Bureau: (https://www.census.gov/library/stories/2022/04/why-study-aging-in-africa-region-with-worlds-youngest-population.html)