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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 [...]

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