News

  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 [...]

  Today, on International Epilepsy Day, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) are calling for accelerated implementation of the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders. This plan, or IGAP, developed by the World Health Organization and unanimously approved by its member states, aims to improve access to treatment, care and quality of life of people with epilepsy, their carers, and families. The theme of International Epilepsy Day this year - the epilepsy journey - has been chosen to spotlight the lived experience of people with epilepsy and those who care for them, aiming to align with and highlight the importance of IGAP's 10-year roadmap. “Stigma continues to be a formidable barrier, impeding the realization of the IGAP goals,” commented Dr Francesca Sofia, president of IBE. “On International Epilepsy Day, IBE, ILAE and our national chapters worldwide unite in a collective effort to combat this stigma and raise awareness through impactful and targeted campaigns. These campaigns are designed to disseminate accurate information about epilepsy but also to challenge deeply ingrained stereotypes and misconceptions that surround the condition and to highlight the accomplishments and resilience of individuals living with epilepsy around [...]

Epilepsy South Africa recently announced a significant milestone in its commitment to inclusivity and accessibility. Thanks to the dedicated efforts of the Epilepsy South Africa team, branches, and IGAP Champions, the organization released translated versions of the Intersectoral Global Action Plan (IGAP) booklet in Sesotho, IsiXhosa, and Afrikaans. The IGAP booklet, a crucial resource in the epilepsy community, is now available for download in these additional languages. This initiative is aimed at better serving and supporting individuals with epilepsy and their families throughout South Africa. Epilepsy, a neurological condition impacting individuals in diverse ways, can have profound effects on social and psychological well-being. The translated IGAP Booklet acts as a comprehensive guide, providing a platform for individuals to comprehend the global epilepsy community's focus on creating an inclusive society for all those affected by epilepsy and other neurological conditions. Highlighting the lived experiences, challenges, and aspirations of individuals with epilepsy worldwide, the IGAP is a powerful tool that offers support, guidance, and a roadmap for moving forward. By engaging and demystifying this neurological condition, the IGAP addresses the critical need for awareness and understanding. In these translated publications, Epilepsy South Africa includes vital information about the IGAP and guidelines for [...]

IBE, via Epilepsy Alliance Europe [EAE], hosted the latest meeting of the EpilepsyPOWER project in Dublin, Ireland. Taking place from October 31 to November 1st, 2023, the consortium met to discuss the creation of 14 learning modules that will target both people with epilepsy, and their employers/educators - to create epilepsy-friendly workplaces and learning institutions across Europe. The next step will be the creation of multi-stakeholder collaborative labs, where the new learning platform and the wider work of the consortium will be presented and discussed with key stakeholders - to inform the final phase of the project. IBE/EAE will lead the collaborative lab in Ireland. Please get in touch if you'd like to be involved, and to learn more about the project see here: https://epilepsypower-project.eu/en/home