News

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

The International Bureau for Epilepsy [IBE] is seeking candidates to apply for two newly created positions: Communications Officer and Engagement Officer. IBE was established in 1961 and has grown to over 160 chapters in over 110 countries; the global voice of people with epilepsy. IBE launched an exciting new strategy in 2022, which is focused on achieving a transformational social change for people with epilepsy worldwide. This is an opportunity to join a small team of dedicated professionals in a growing organisation, supporting efforts at a global and regional level to improve the quality of life of people with epilepsy. Both positions come with a 12-month fixed-term, full-time contract with possibility to extend. New recruits will work remotely, but some travel may be required. IBE is registered as an employer in Ireland and the United Kingdom. Applicants should be based in these countries. However, a freelance consultant/self-employed contractor – or similar arrangement – may be considered in other locations. The closing date for applications is Friday, January 19th 2023. Interviews will take place via Zoom on Tuesday, 30th January and Wednesday, 31st January IBE strongly encourages candidates of all backgrounds and identities to apply. As a global organisation, we value [...]

The curtains may have closed on the 35th International Congress (IEC), but the echoes of the event continue to resonate with us. We want to share with you some of the highlights from this unforgettable event. New Hashtag Created: To amplify the voices of lived experience during IEC we registered a dedicated hashtag, #EpilepsyVoices at Symplur’s Healthcare Hashtag Project, to use alongside the official #IEC2023 hashtag. We plan to continue to use this hashtag on our social media channels when sharing the voice of the person with lived experience of epilepsy and encourage you to do the same. Lived Experience Speakers: A key focus of this year’s Congress was the inclusion of speakers with lived experience. These speakers grounded the Congress in real-life experiences, reminding attendees that every data point represents a life, a family, and a unique journey. Citizen Journalists: This innovative addition infused IEC 2023 with fresh perspectives. The participation of citizen journalists brought the voice of the people with direct experience of epilepsy to the forefront. Keep an eye on our social media channels over the coming days and weeks as we share video interviews conducted at IEC by two of our intrepid journalists, Anita Mago and [...]