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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

Help Shape Inclusion Systems for People with Epilepsy2023-02-01T08:53:31+00:00

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 [...]

IGAP Unpacked2024-07-11T13:01:10+00:00

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

Improving the Lives of People with Epilepsy: WHO Technical Brief2022-12-13T10:54:50+00:00

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 [...]

Tempestina e le gironiche2022-11-28T11:06:05+00:00

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

Art Exhibition IBE Epilepsy & Society Symposium 14th AOEC Congress2022-11-23T08:09:21+00:00

LAEC Regional Winners 2024

Latin America Regional Golden Light Award Winners 2024 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.     Read Delfina's Story Read Francisca's Story Read Adriana's Story

LAEC Regional Winners 20242025-06-12T23:00:50+00:00

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

Announcing Asian & Oceanian Golden Light Award Winners 20222024-06-12T19:41:42+00:00

Join Us for IBE Epilepsy & Society Virtual Symposium at 14th AOEC Congress

Did you know that the World Health Organisation has launched a 10-year Global Action Plan on Epilepsy and other Neurological Disorders (IGAP)? The IGAP will focus on strengthening the public health approach to epilepsy around the world, with a focus on ensuring access to care and protecting the human rights of people with epilepsy everywhere. At this year’s Asian and Oceanian Epilepsy Congress, we will hear from health care professionals, researchers, policymakers, people with epilepsy and their representatives to discuss how the IGAP can be implemented in the region and the impact that is expected. This will be an important opportunity to learn more about the IGAP and to discuss - together - how we can implement actions in your region to close the treatment and inclusion gaps. This congress is an important event for the region, and we want to ensure that the voice of people with epilepsy is heard throughout. Registration, at a discounted rate for patient advocates, to attend the Congress is now open. There is no cost to attend the IBE Epilepsy and Society Symposium - but registration is required. You can register using the link below. Please note that we have also extended the deadline [...]

Join Us for IBE Epilepsy & Society Virtual Symposium at 14th AOEC Congress2022-10-21T15:47:44+00:00

Announcing Call For Art Entries For IBE Epilepsy & Society Virtual Symposium during 14th AOEC Congress

We are delighted to announce a call for entries for the art exhibition at AOEC on the theme of "Stigma." The call is open to everyone of any age, including people with epilepsy and their carers, doctors, nurses, social workers, etc. All entries will be included in the online art exhibition as an image gallery featured as part of the virtual 14th AOEC. Entries will automatically go forward to a global competition to mark International Epilepsy Day, which takes place on February 13th, 2023. The theme of International Epilepsy Day 2023 will also focus on the theme of stigma. We look forward to receiving your submissions! Please read entry rules and use the form below to submit your entry. Closing date for entries is Friday, 4th November, 2022. If you have difficulty submitting via the online form below click here to download the entry form. Entry Rules Brain On Fire: Stigma (Sarah Brown) Join us on Saturday, 19th November, for the IBE Epilepsy & Society Symposium as part of the 14th Asian and Oceanian Epilepsy Congress programme.

Announcing Call For Art Entries For IBE Epilepsy & Society Virtual Symposium during 14th AOEC Congress2022-11-27T16:10:18+00:00

Advocate’s Toolkit for Reducing Epilepsy Stigma in Africa

Dear Friends, This toolkit is a milestone in IBE’s commitment to empower people with epilepsy. It recognises that stigma is a major barrier preventing social inclusion and access to health care and treatment for people with epilepsy. The stigma surrounding epilepsy takes many forms and infects every aspect of the lives of people with epilepsy. Stigma is present in the family, community, school, clinic, and workplace. As a result, people with epilepsy tend to hide their condition and are precluded from a life of dignity. This toolkit is full of resources, ideas, and guidance for addressing and dismantling stigma in the various communities on the African continent. The toolkit was developed to help advocates to be proactive in shaping communities that are inclusive of the needs of all people with epilepsy. I am grateful to all who contributed to this project which brings us one step closer to a transformational social change so badly needed by people with epilepsy in Africa. –Francesca Sofia, President IBE Download Stigma Toolkit WHO THIS TOOLKIT IS FOR AND HOW TO USE IT This toolkit is intended to be a ‘how to’ guide for recognising distinct types and forms [...]

Advocate’s Toolkit for Reducing Epilepsy Stigma in Africa2024-05-27T12:19:46+00:00
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