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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 [...]

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 [...]