Congratulations 2023 Award Winners

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 [...]

2023-07-28T19:53:29+00:00April 3rd, 2023|

ICHOM Launches Adult and Pediatric Epilepsy Set of Patient-Centered Outcome Measures

The launch of the ICHOM Adult and Pediatric Epilepsy Set of Patient-Centered Outcome Measures is a significant step towards improving the quality of care for epilepsy patients globally. By tracking outcomes and collecting data, healthcare providers can identify areas for improvement and make informed decisions to enhance patient care. The availability of a standardized set of outcome measures for epilepsy patients across all age groups allows for consistent and comparable data collection and analysis, which can facilitate benchmarking and sharing of best practices across healthcare settings worldwide. IBE was well represented in the team that developed this set, with representation from our President, Dr. Francesca Sofia, and Secretary-General, Prof. Gus Baker. IBE Youth Team members Lorraine Lally (Ireland), Cassidy Megan (Canada), and Leonie Wollscheid (Germany) also participated, along with three people with epilepsy from our African region: Action Amos (Malawi), Sharlene Cassel (South Africa) and Sharon Mbuga (Kenya). Our regional Vice-President for Latin America, Dr. Tomas Mesa (Chile), was also part of the group. The team also includes members affiliated with IBE chapters, ensuring real global representation of those with epilepsy. Patients from IBE's international network who have epilepsy also contributed to the final results of the validation survey. From IBE, [...]

2023-03-21T10:12:44+00:00March 20th, 2023|

IBE Joins OneNeurology Partnership

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, [...]

2023-07-28T19:58:33+00:00February 13th, 2023|

Help Shape Inclusion Systems for People with Epilepsy

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

2023-02-01T08:53:31+00:00January 18th, 2023|

IGAP Unpacked

IBE is delighted to share with you our latest publication, entitled "IGAP Unpacked". Following last year's milestone adoption of the WHO Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) and subsequent consultations with all our regions and chapters, this newly developed IBE resource aspires to serve as a practical guide for our chapters and epilepsy advocates to support IGAP-related activities. As such, "IGAP Unpacked" offers our regions and chapters: a compact translation of what IGAP is and why it is important for our global community how IGAP can be successfully leveraged as a policy framework to make epilepsy a global public health priority concrete recommendations for IGAP-directed policy advocacy and implementation actions key facts and figures around epilepsy and links to important resources in the field Building on this work, IBE will soon launch a series of eLearning Modules, to be hosted within our Knowledge Hub, equipping chapters and epilepsy advocates with the tools and know-how around WHO's IGAP, the United Nations Sustainable Development Goals (UN SDGs), health diplomacy, and negotiation in the context of epilepsy advocacy. At IBE, we are most grateful to collaborate with you all to take a person-centered approach to [...]

2023-07-23T12:37:49+00:00January 13th, 2023|

Call for Nominations: ILAE-IBE Awards

Nominations are now open for awards to be presented at the 2023 International Epilepsy Congress in Dublin, Ireland. Past recipients, rules and nomination forms for each award: Lifetime Achievement Award Social Accomplishment Award Ambassador for Epilepsy Submission deadline: Friday, 20 January 2023

2022-12-19T13:49:52+00:00December 19th, 2022|

Improving the Lives of People with Epilepsy: WHO Technical Brief

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

2022-12-13T10:54:50+00:00December 13th, 2022|

Tempestina e le gironiche

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 [...]

2022-11-28T11:06:05+00:00November 27th, 2022|

Art Exhibition IBE Epilepsy & Society Symposium 14th AOEC Congress

As part of the recent AOEC Congress, we called for art submissions on the theme of stigma. Our thanks to all who entered for your time and effort. Art Submissions at the IBE Epilepsy & Society Symposium as part of the 14th Asian and Oceanian Epilepsy Congress programme. View Slideshow Watch Video

2022-11-23T08:09:21+00:00November 22nd, 2022|

Announcing Asian & Oceanian Golden Light Award Winners 2022

Golden Lights at the 14th Asian & Oceanian Epilepsy Congress The IBE Golden Light Awards are an opportunity to recognise and reward young people affected by epilepsy - either because they have epilepsy or have made a significant positive impact on the lives of others who have the condition. The aim is to show that people with epilepsy do not have to be defined by their epilepsy but who embrace the call of the International Bureau for Epilepsy to ‘bring epilepsy out of the shadows and into the light’. Three worthy candidates, nominated by their chapters, were honoured during the Epilepsy & Society Symposium at the 14th Asian & Oceanian Epilepsy Congress which took place 19th November 2022.   Hear From Our Winners     Read Naziya's Story Read Jae Shin's Story Read Lee May's Story    Read Hsiu-Wen's Story Read Aditya's Story   Read Yawen's Story Your Content Goes Here Read Orla's Story   Read Wilson's Story

2023-05-19T12:21:24+00:00November 19th, 2022|
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