News

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, [...]

A newly launched European project called EpilepsyPOWER aims to ensure people with epilepsy are not marginalized in the workplace. Tools and training will be developed for businesses and academic institutions to create and implement epilepsy inclusion systems. Two surveys have been created to shape the development of these tools. Results from the survey will help identify epilepsy knowledge, attitudes, and practices. This will enable the project team to create targeted solutions that shift attitudes and cultures toward people with epilepsy. The questionnaires are available in 6 languages: English, French, Italian, German and Bulgarian. The first questionnaire is aimed at people with epilepsy. The second survey is targeted at representatives of higher education institutions. Spread the word and take the survey. Surveys are anonymous and confidential. Responses are due February 18th, 2023. For more on the EpilepsyPOWER project, visit: English (epilepsypower-project.eu) Take Survey

The World Health Organisation has launched an epilepsy technical brief to strengthen action for epilepsy. This brief is a technical complement to the Intersectoral Global Action Plan on epilepsy and other neurological disorders 2022–2031. It presents the key information on epilepsy and recommends actions to policymakers and other stakeholders which should strengthen services for people with epilepsy, and result in an improvement in quality of life. The brief takes a person-centered approach based on human rights and universal health coverage. The document can be downloaded at the link below. Download

We are pleased to share news from A.E. (Associazione Epilessia) about the publication of Tempestina e le gironiche, a book that tells the story of how a child's first seizures and epilepsy diagnosis disrupted everyday life and forced the whole family to adjust. This book is useful for understanding how to explain to a child that epilepsy is a serious condition that must be faced with courage and without shame. Life can be upset by epilepsy, but it shouldn't be hidden, it's actually meant to be shared, to feel less alone, less vulnerable, and less different. Despite its simplicity, this book tells the truth about the condition and sows the seeds of a great transformation in regard to epilepsy for this very reason. As a result, we are able to move from fear to cure together. Siamo lieti di condividere la notizia di A.E. (Associazione Epilessia) sulla pubblicazione di Tempestina e le gironiche, un libro che racconta la storia di come le prime crisi epilettiche e la diagnosi di epilessia di un bambino hanno sconvolto la vita di tutti i giorni e costretto tutta la famiglia ad adattarsi. Questo libro è utile per capire come spiegare ad un bambino che l'epilessia [...]