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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 [...]

The International Bureau for Epilepsy's Global Youth Team is excited to announce a series of seven virtual workshops taking place this Autumn, specifically designed for young people aged 18-35 with epilepsy. The purpose of the workshops will be to explore the emerging themes of the ongoing Global Epilepsy Needs Survey (GENS) as they relate specifically to young adults with epilepsy, and with a particular focus on regional needs and challenges. It will be an opportunity to discuss and explore the young people's personal experiences, and priorities, and brainstorm how IBE and its chapters can address them. When and where will the workshops take place? Workshops will be held virtually from late October to mid-November. Specific dates will depend on your region. Workshops will be offered in: English: North America, Europe, South East Asia, Western Pacific, Africa, and Eastern Mediterranean regions. Spanish and Portuguese: Latin American region. How can I participate? To express your interest and find out the date of your region's workshop, please complete the expression of interest form below: English: IBE Regional Workshop Interest Form Spanish: IBE Talleres Regionales - formulario de manifestación de interés We look forward to connecting with you and hearing your valuable insights! [...]

The International Bureau for Epilepsy's (IBE) Global Epilepsy Needs Survey (GENS) is your chance to speak up and make a real difference. After a successful launch across 15 countries, GENS is now open to everyone with epilepsy (18+) and their caregivers worldwide. This is your opportunity to shape the future of epilepsy care and inspire change on a global scale. Learn More About GENS Why Your Voice Matters Your unique experiences and needs will illuminate the biggest unmet needs in your country, and contribute to a groundbreaking global study. Your answers will inform solutions that work best for you and your family, and shape information and support programs worldwide. Your insights will help: Build on existing knowledge: Provide a more comprehensive picture of the true needs of individuals with epilepsy and their caregivers, beyond medical needs. Guide Global Action: Inform the development of effective policies, research, and healthcare programmes tailored to your needs. Empower Local Change: Provide your country's IBE chapter with the evidence they need to advocate for change at the national level. Take the GENS survey today and help shape a world where epilepsy is better understood and supported. The survey closes on October 20th and is available in [...]

Dear friends, We are incredibly excited about the upcoming IBE Europe Chapters Convention, taking place on September 12th and 13th in the beautiful city of Rome. This gathering holds immense importance as a chance for representatives from across Europe to connect, collaborate, and shape the future of our region. Your participation and enthusiasm are crucial for making this a success, and we know the knowledge-sharing and networking will help build a stronger, more united Europe ready to face global challenges. Over these two days, we'll dive deep into three key areas: projects and programs, policy and advocacy, and research and innovation. Chapters will have the opportunity to share best practices and learn from one another, while also enjoying dedicated spaces for exchanging ideas and networking. And of course, we haven't forgotten the social side – there will be plenty of time to relax and connect informally. The IBE European Region aims to use this opportunity to co-create a strategic roadmap addressing our chapters' concerns and priorities at the European level, while also empowering chapters to advance these efforts nationally. In closing, I would like to convey the excitement with which we are approaching the Chapter Convention and emphasize how essential [...]