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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 [...]

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