News

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 [...]

On 2 December 2025, the European Parliament became a meeting place for dialogue, reflection and renewed ambition as policymakers, clinicians, researchers, patient organisations and people with lived experience came together to explore how Europe can better respond to epilepsy and rare diseases. Co-organised by the IBE and the Spanish Epilepsy Federation (FEDE), and hosted by MEP Elena Nevado del Campo, the meeting focused on breaking down long-standing silos and building stronger synergies between epilepsy and rare disease policy. With contributions from Members of the European Parliament and representatives of EU institutions, the discussions underscored both the scale of the challenge and the opportunity for coordinated European action. Across the discussions, a clear picture emerged: while epilepsy is common, many epileptic syndromes are rare, complex and poorly understood, leaving people and families navigating fragmented systems of care. Drawing on evidence from IBE’s Global Epilepsy Needs Study, participants reflected on the everyday barriers people with epilepsy continue to face across Europe – from delayed diagnosis and uneven access to specialised care, to stigma, mental health challenges and restrictions on education, work and social participation. Rather than viewing these challenges in isolation, the meeting placed them firmly within a broader global and [...]

The UN will convene their High-Level Meeting on Noncommunicable Diseases (HLM4) on 25 September in New York, where Heads of State and Government will set a new vision to prevent and control NCDs towards 2030 and 2050. The outcome—a political declaration to be decided during the UN General Assembly (UNGA80)—offers a unique opportunity to secure an ambitious and achievable global commitment on NCDs towards 2050. The urgency could not be greater. More than three billion people live with a neurological condition and 970 million with a mental health disorder worldwide. Neurological conditions alone are now the leading cause of ill health and disability globally. The costs are immense—straining national budgets, reducing productivity, and slowing long-term economic growth. Increasingly, brain health is recognised not only as a health priority but also as a fiscal and social policy issue, with brain capital emerging as a driver of national competitiveness. Neurology must be central to this conversation. Encouragingly, neurological conditions are now included in the latest draft text—but much more must be done to ensure that brain health is visible within the broader NCD agenda. Representing this call, Ms. Donna Walsh, CEO of the International Bureau for Epilepsy (IBE) and Chair of OneNeurology, [...]

The countdown has begun for the 36th International Epilepsy Congress (IEC2025), which will take place 30 August – 3 September 2025, in Lisbon, Portugal. Following the success of our first initiative in 2023, this year’s congress will once again feature citizen journalists—an innovative addition that brings fresh perspectives to the event. Their role is to amplify the voices of those with direct experience of epilepsy, whether through their own diagnosis or in caring for a loved one. By sharing stories and reflections, they will provide a unique lens through which the congress can be experienced. Bridging the Gap Between Clinical and Lived Experience The inclusion of citizen journalists reflects a wider movement in healthcare towards person-centred care. It recognises that people living with epilepsy, and those who support them, carry valuable insights that can enrich professional understanding and ultimately improve outcomes. As Lisbon prepares to host a global community of clinicians, researchers, advocates, and people affected by epilepsy, IEC 2025 promises not only to advance medical knowledge but also to elevate the voices of lived experience at the heart of the conversation. Look out for our citizen journalists throughout the congress as they capture highlights, share their perspectives, and bring [...]

      We are pleased to announce that Francesca Sofia has been reappointed as President of the International Bureau for Epilepsy (IBE), beginning her second term following recent constitutional reforms that allow for consecutive presidential terms. In a message to the IBE community, Francesca expressed gratitude and a renewed sense of purpose, noting that this next chapter represents not just continuity but momentum toward greater inclusion, resilience, and global impact. Reflecting on achievements from her first term—including the launch of the Global Epilepsy Leaders (GELs) Programme, the Global Epilepsy Needs Study (GENS), and progress toward implementing the Intersectoral Global Action Plan (IGAP)—Francesca reaffirmed IBE’s commitment to putting lived experience at the centre of its work. “What we are building is not just a collection of programs,” she said. “It is a movement... grounded in truth and lived experience.” We look forward to continuing this important journey under her leadership.  

In February 2025, New Delhi hosted the 15th Asian and Oceanian Epilepsy Congress (AOEC) which brought together leaders, advocates, and researchers from across the region. Alongside the main scientific programme, the International Bureau for Epilepsy (IBE) hosted a powerful and thought-provoking Epilepsy and Society Symposium—a day dedicated to the lives, rights, and voices of people with epilepsy. IBE CEO, Ms Donna Walsh, Mr Graham Shears, Dr. Man Mohan Mehndiratta, Professor Gus Baker The symposium opened with a welcome from Dr Man Mohan Mehndiratta, IBE South East Asia Regional Vice President, and Professor Gus Baker, Secretary General of IBE. The focus was clear: a working session designed to listen, learn, and identify practical ways to improve life for people with epilepsy across the region. The day began with Claire Nolan, IBE Head of Engagement, presenting the findings of the Global Epilepsy Needs Study (GENS). This landmark project gathered insights directly from people affected by epilepsy to identify what they need—not just medically, but across the full scope of their lives. Several countries in the region, including India, Australia, South Korea, China, and Hong Kong SAR, had participated. The findings offer detailed insight into the day-to-day realities [...]

The IBE welcomes the release of a new position paper from the OneNeurology Partnership—co-chaired by IBE CEO Donna Walsh—calling on UN Member States to formally recognise neurological conditions as a distinct pillar in the global response to non-communicable diseases (NCDs). Published ahead of September’s Fourth UN High-Level Meeting on NCDs and Mental Health, the paper urges global health leaders to give brain health the political recognition and investment it urgently needs. Among the conditions highlighted, epilepsy stands out as one of the most common and treatable neurological disorders—and one of the most neglected. Neurological Conditions: An Overlooked Priority in the Global NCD Response Although neurological disorders collectively represent the leading cause of disability and the second leading cause of death globally, they remain largely absent from past UN Political Declarations on NCDs. Epilepsy, in particular, has been overlooked—despite the availability of safe, low-cost medications that could help the majority of people control their seizures. In low-income countries, more than 70% of people with epilepsy receive no treatment. This is not due to a lack of solutions but to a lack of prioritisation. "The absence of epilepsy and other neurological conditions from previous declarations has had direct consequences for national funding. [...]

The International Bureau for Epilepsy (IBE) Africa is seeking a passionate and creative individual to fill the role of Part-Time Communications Officer. This remote position, based anywhere in Africa, offers an exciting opportunity to make a real difference in raising awareness about epilepsy and strengthening IBE's reach across the continent. Key Responsibilities: Support IBE Africa's epilepsy awareness campaigns through creative content creation and dissemination strategies Manage stakeholder engagement initiatives to build strong relationships with key partners Contribute to the development and implementation of effective communication plans Why You Should Apply: Are you a skilled communicator with a passion for epilepsy awareness? Do you possess exceptional writing and editing abilities? Are you proficient in social media management and content creation? If you answered yes to these questions, then we encourage you to apply! Application Deadline: January 31st, 2025 Detailed Job Description

  IBE is pleased to invite you to attend a one-hour zoom webinar on Developmental and Epileptic Encephalopathies: Now and Next. This webinar is aimed at DEE families and advocates, but also IBE chapters and other stakeholders who want to learn more about advances in the DEE space. In this session, on November 20th, we will have presentations from world-leading healthcare professionals and researchers on the future of diagnosis, treatment and care for people with developmental and epileptic encephalopathies [DEEs]. This session builds on the themes which emerged during the recent European Epilepsy Congress but will be delivered in an engaging and accessible format, with three 10-minute presentations. Each presentation will be followed by a short reflection from an expert representing our community of people with lived experience. This session will take place via Zoom and simultaneous translation will be provided in French, Spanish and Italian. Further languages may be added depending on interest. An on-demand recording will be made available to those unable to attend live, but please register to ensure you receive the recording after the session. Download Agenda This initial webinar will be followed by a series of ‘Ask the Expert’ live Q&As, specifically focussed on Dravet Syndrome [...]