Francesca Sofia Reappointed as IBE President for a Second Term

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.

  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

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 [...]

It gives us great pleasure to share this IGAP Online Webinar (Spanish and English) which took place on 12 September, organised by FUNDHEMI, FEDE, LICHE, and the IBE to celebrate Latin American Epilepsy Week. The discussion centered on the following topics: What is the WHO Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-31 (IGAP)What is the importance of IGAP for the global epilepsy community What is the IBE doing to support and ensure the implementation of the person-centered IGAP at global, regional, and national levels Sharing of examples of IGAP policy promotion and implementation at the national level, with eminent case studies from our IBE Chapters in Chile (LICHE) and Spain (FEDE) We hope that this interactive event will continue to inspire fruitful discussions, synergies, and joint learning as we seek to make epilepsy a global health priority and achieve transformative social change for people with epilepsy worldwide. Learn more: ¿Qué es el IGAP? y cómo transformarlo en acciones en favor de las personas con epilepsia - Epiforward Nos complace compartir este Webinar del IGAP (español e inglés) que tuvo lugar el 12 de septiembre, organizado por FUNDHEMI, FEDE, LICHE y el [...]

Epilepsy isn't just a medical condition; it's a journey that profoundly impacts individuals and their families. Having an understanding of the medical aspects of epilepsy is crucial, but understanding the emotional, psychological, and social aspects is just as important. A key focus of this year’s International Epilepsy Congress (IEC2023) will be the inclusion of speakers with lived experience. Lived experience is the insight and knowledge gained from personal experience with a particular condition. At IEC2023, people with epilepsy - and those caring for someone with epilepsy - will share their unique perspectives. These speakers will ground the Congress in real experiences, reminding attendees that every data point represents a life, a family, and a unique journey. It is a testament to the evolving nature of IEC that speakers with lived experience are included at this year’s Congress. By bringing these speakers to the main stage, we hope to foster a more holistic understanding and inspire hope for those living with epilepsy. Meet Our Lived Experience Speakers Francesca Sofia 4th September; 12.00-1.30 pm. Moving Forward: One year on from approval of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP). What [...]

The countdown has begun for the 35th International Epilepsy Congress (IEC2023), which will take place 2 – 6 September 2023, in Dublin, Ireland. This year, an innovative addition promises to infuse the event with fresh perspectives - the participation of citizen journalists - with the aim of bringing the voice of the people with direct experience of epilepsy to the forefront. These individuals, whose lives have been directly touched by epilepsy, either through their own personal diagnosis or by providing care to someone with the condition, are positioned to provide a distinctive perspective through which IEC2023 can be experienced. Bridging The Gap Between Clinical and Lived Experiences The concept of integrating citizen journalists into a medical congress like IEC2023 reflects a broader trend in healthcare - a shift toward person-centered care. This approach acknowledges that persons with lived experience of a condition and their caregivers possess a wealth of insights that can enhance medical understanding and patient outcomes. As Dublin prepares to welcome a diverse array of attendees, the stage is set for an unforgettable event that not only advances medical knowledge but also elevates the voice of lived experience. Meet Our Citizen Journalists [...]

We are pleased to inform you that the WHO Committee on Essential Medicines has given its approval for the addition of oral levetiracetam for the treatment of focal-onset and generalized-onset seizures in its Model List of Essential Medicines (EML) and Essential Medicine for Children (EMLc). Parenteral levetiracetam has also been added to the complementary lists of the EML and EMLc for use in the management of benzodiazepine-refractory status epilepticus. The inclusion of levetiracetam on the Model Lists, which often guide the development of government pharmaceutical formularies, offers the potential for increasing the range of treatment options available for people with #epilepsy and could help to reduce the mortality and morbidity associated with prolonged seizures.IBE submitted letters to WHO requesting this addition, and also worked in partnership with other global patient organisations - such as those representing people with multiple sclerosis and Alzheimer's Disease groups - to submit a written statement to the recent committee meeting. Section 5.1 (new sub-section) Antiseizure medicines The Expert Committee recommended the inclusion of oral levetiracetam on the core list of the EML and EMLc for the treatment of focal-onset and generalized-onset seizures in adults in children. The Committee also recommended the inclusion of parenteral levetiracetam on [...]

June 29th, 2023 - At a webinar to celebrate young people with epilepsy - in advance of International Youth Day 2023 - IBE announces its bi-annual, global Golden Light Award winners. Three inspiring young people - from Brazil, Tanzania and Ireland - were selected to receive this year's award, from over 20 nominations received from across the world. The Awards are an opportunity to recognise and reward outstanding young people who live with epilepsy or care for a person with epilepsy. 'There are so many young people with epilepsy globally who are working to improve the quality of life of others through activities such advocacy, awareness raising, information sharing, fundraising and so much more,' said IBE Secretary-General, Prof. Gus Baker, who was part of the 2023 judging panel. 'Although we could only choose three winners, we also highly commend the work of all those nominated who are a real inspiration for other young people around the world. Their efforts will help us to achieve IBE's vision of a transformational social change for young people with epilepsy worldwide.' Learn more about our 2023 recipients below, who will receive their award during the opening ceremony of the 35th International Epilepsy Congress in [...]

The 35th International Epilepsy Congress is Coming to Ireland! Mark your calendars for this September, as Ireland welcomes the 35th International Epilepsy Congress (IEC). Organized biennially by the International League Against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE), this prestigious event stands as the most significant global scientific gathering focused on epilepsy. Date and Location IEC will take place from 2 - 6 September 2023 at the Convention Centre, located in the heart of Dublin, Ireland. Epilepsy Ireland, as the local epilepsy patient organization, has been working closely with IBE and ILAE in orchestrating the Congress, expecting to draw over 3,000 professionals dedicated to epilepsy care from across the globe. An exciting development this year is the inclusion of a special public program, arranged by Epilepsy Ireland, held over two evenings. The program features renowned epilepsy experts who will present their research and findings in a way that's easy for everyone to understand. In-Person and Virtual Attendance We would appeal to every who can to please join us in-person if possible. This public facing element of the Congress is the first time this has ever happened and we hope this event will become a fixture [...]

We were pleased to join our colleagues International League Against Epilepsy and the World Federation Of Neurology for a recent webinar celebrating one year since the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) was unanimously approved by World Health Organization Member States. At this event, IBE President Francesca Sofia spoke about what IGAP means for people with epilepsy and other neurological disorders. The video replay is now available to watch. WHO Publishes Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders in All Six UN Languages The World Health Organization (WHO) has published the Intersectoral global action plan on epilepsy and other neurological disorders (IGAP) in all six UN languages.The action plan outlines five strategic objectives: to raise policy prioritization and strengthen governance; to provide effective, timely and responsive diagnosis, treatment and care; to implement strategies for promotion and prevention; to foster research and innovation and strengthen information systems; and to strengthen the public health approach to epilepsy.Actions suggested under each strategic objective are aimed at countries and partners, with WHO providing technical support and guidance in the implementation of the plan.There are 10 global targets with measurable indicators to track the achievement [...]

Living with epilepsy as a young person can be challenging, but you don't have to face it alone. IBE, along with our Global Youth Team, is pleased to announce an upcoming event scheduled for July 29th. This event offers a platform where you can learn from other young people, foster connections, and most importantly, have your voice heard! In advance of UN International Youth Day 2023, join us to: Learn more about our Youth Programme Follow the personal journeys of our inspiring Global Youth Team Members Meet some of our 2023 International Golden Light Award Winners Have your say on priorities for Young People with Epilepsy Help us shape our future epilepsy youth initiatives Get involved in our network of young people with epilepsy worldwide * Simultaneous Spanish translation will be available/ Habrá traducción simultánea al español. Register Your Interest Today Don’t miss out on this unique opportunity to learn, engage, and contribute to a global network of young people with epilepsy. Register your interest today at bit.ly/IBEYouthWebinar. We look forward to seeing you there! Download Flyer En Español

Being a woman with epilepsy is not the same as being a man with epilepsy. This is especially noticeable when a woman reaches childbearing age and becomes sexually active. Seizures can be influenced by the female hormones of oestrogen and progesterone, resulting in issues for women across the life course from puberty to menopause and beyond. On June 2nd, 2023, IBE hosted a virtual conference to explore the issues facing women with epilepsy. We are pleased to share with you a recording of this event in English and Spanish. In Part 1 of this virtual conference, you will hear about the latest research and clinical best practice in the field from leading experts, as well as hear the experiences of women with epilepsy directly. Part 2 focuses on the social impact of epilepsy on women affected, and discusses intersectoral solutions – ranging from policy interventions to psycho-social support. We invite you to watch these recordings and visit our Women and Epilepsy website for more information. We are currently working on updating the website with additional resources, so be sure to check back for future updates.

Exploring Epilepsy and the Family A Report from the Global Youth Team of the International Bureau for Epilepsy [IBE] on International Day of Families 2023. For young people with epilepsy, the role of family is crucial to support their development and allow them to reach their true potential. Ahead of the UN International Day of Families, the IBE Global Youth Team asked their families about their experiences supporting loved ones with epilepsy. Youth Team members then produced a report outlining their findings and making some important recommendations for the epilepsy community and beyond. We invite you to download this article and get in touch with your own work or research on this topic, or any experiences, comments or reflections on this work ([email protected]). The IBE Youth Team connects young people with epilepsy around the world, develops young epilepsy advocates and enables them to partner with those working across epilepsy research, healthcare and policy making. The Youth Team meets monthly to discuss and shape the IBE Youth Programme. Download Report En Español

The world of sexual development, menstruation, contraception, fertility, pregnancy and menopause is complex, but when you have epilepsy, there are extra issues you need to know about.   Unfortunately, being a woman with epilepsy is not the same as being a man with epilepsy. On Friday, June 2nd, from 1 pm to 4 pm CEST, the International Bureau for Epilepsy [IBE] will host a FREE virtual event to dive deeper into this important topic. Together with a panel of international experts, we will: - Profile the personal journeys of women with epilepsy and explore the unique burden and challenges they face globally. - Hear the opinions of multi-stakeholder experts on the priority actions that should be taken to address the impact. - Highlight IBE's work on empowering and educating women with epilepsy, and those who care for them. - Showcase the latest scientific evidence and clinical guidance on managing epilepsy in women. - Provide a platform for the audience to share their views, ask questions and shape next steps.   The meeting will be held in English, but Spanish translation will be available throughout. Registration is now open until Wednesday, May 31st. Secure your place now by registering at: ibe-epilepsy.wecongress.es [...]

Have you, or a family member, been diagnosed with focal epilepsy which is not currently fully controlled by medication? Are you based in the United States or Israel, and between the ages of 18 to 65? If so, you may wish to consider enrolling in the Harmonie study. The Harmonie study is researching EQU-001, a study medication that may be able to prevent or decrease focal onset seizures. The study medication will be researched in combination with approved medications. Researchers are looking for people who continue to have focal onset seizures, despite taking anti-seizure medication(s), to join the study. For more information on this study, and to see if there is a study site near you, please visit the website: https://www.harmonieresearch.com More sites will be opening internationally in the months to come. So, if you are interested in taking part, continue to check the website for opportunities near you – or contact: [email protected] Note: IBE is not directly involved in the study, and so please contact your local study team if you are interested in learning more or getting involved. Learn More

On behalf of the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), it gives us great pleasure to announce the winners of the Lifetime Achievement Awards, the Social Accomplishment Award and the Ambassador for Epilepsy Awards 2023. All of the award recipients are most notable winners who have worked selflessly with ILAE and/or IBE for many years towards achieving the missions of both organizations. It is people like them that help us close the treatment gap and improve the lives of those affected by epilepsy. We are pleased to see that our awardees come from all corners of the world demonstrating the importance of our regional committees and the work that they do on the ground. Congratulations to all recipients! We are grateful for your distinguished service and contributions to the epilepsy community. The awards will be presented during the Welcome Ceremony of the International Epilepsy Congress taking place in Dublin on the evening of 2 September. We do hope that as many of you as possible can join us in person in congratulating them on the night and in celebrating their achievements. With our best wishes, Prof. J. Helen Cross, President of ILAE Dr. Francesca [...]

We are delighted to announce that the International Bureau for Epilepsy (IBE) has joined the OneNeurology Partnership. This exciting partnership brings together leading organizations in the field of neurology to work towards a common goal of improving the lives of people with neurological conditions. The Partnership, composed of international neurological organisations and regional umbrella groups, are uniting to make neurology a global public health priority. It is a multi-stakeholder, patient-focused partnership which aims to strengthen neurology-related groups to stimulate collaborative advocacy, action and accountability for the prevention, treatment and management of neurological disorders worldwide. Speaking about the decision to join the OneNeurology Partnership, IBE CEO Donna Walsh said: “At the International Bureau for Epilepsy, we are firm believers in the value of collaborative advocacy actions across the field of neurology and brain health. Via the OneNeurology Partnership, we hope that we can leverage synergies, share learnings and best practices, and work together on common challenges and opportunities. As the global voice of people with epilepsy, we are honoured to join like-minded organisations as part of this global, patient-focused initiative; teaming up to make neurology a public health priority everywhere!” Other members of the Partnership include organisations such as Alzheimer’s Disease International, [...]