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IBE Day at the 34th International Epilepsy Congress

If you missed IBE Day at the 34th International Epilepsy Congress on Septmeber 1st don't worry- you can catch up with each of the day's sessions below! Making Epilepsy a National Health Priority – intersectoral collaboration Chairs: Mary Secco, IBE Secretary General and Action Amos, IBE Vice President Africa Empowering Youth to Raise their Voices Chair: Lorraine Lally (Ireland), co-chair of the IBE Youth Team Psychologic treatment and self-management of epilepsy Chair: Gus Baker (UK)

2021-09-15T10:01:47+00:00September 15th, 2021|
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Report from the Roundtable on the Intersectoral Global Action Plan for Epilepsy and Other Neurological Disorders

Download this report in .pdf format On 16 July 2021, ILAE and IBE hosted a virtual roundtable discussion with over 160 participants from 50 countries including representatives from Ministries of Health, Education and Employment to Inspire a Decade of Action guided by the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders. Highlights and additional information are available below. Full recording of the roundtable, including the interventions by representatives from the Ministries of Health/Missions of Lesotho, Russia and Uruguay can be accessed at https://youtu.be/6hcD9jpMu08 Past, Present, Future – Action to Address Epilepsy Road to the Resolution and Action Plan Prof Alla Guekht, ILAE Vice President Prof Guekht gave a presentation on the progress and major milestones since the launch of the Global Campaign in 1997. Watch her presentation and learn more about the 2020 Resolution and the Out of Shadows campaign. Draft Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders Dr Tarun Dua, Head Brain Health Unit, WHO Dr Dua provided an overview of the draft Global Action Plan and the process from now to the Executive Board in early 2022 and the World Health Assembly in May 2022. She invited contributions as part of the consultation ending [...]

2021-07-23T16:13:30+00:00July 23rd, 2021|
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Employment Opportunity at IBE

Due to the retirement of its Executive Director in December 2021, IBE invites applications from suitably qualified candidates to be considered for the position of incoming Executive Director. The role involves the provision of overall guidance and support to the leadership of IBE and the provision of direction and management of all aspects of administration, growth and development of IBE, with specific responsibility for implementing the IBE strategic plan and policies. Candidates will be required to have a university level qualification, a minimum of eight years’ experience in a similar role in an international organisation, and be fluent in both written and spoken English. Knowledge of a second widely-spoken language would be an advantage. Salary will be commiserate with qualification and experience. Interested candidates are asked to submit their CV before a deadline of 30th August 2021. A short-list of candidates will then be invited for interview. IBE is an equal opportunities employer. Submit your application here

2021-10-06T09:13:49+00:00July 22nd, 2021|
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Epilepsy and Pregnancy – Survey report

While the majority of women with epilepsy will have successful pregnancies, it is vital that women of childbearing age are fully informed on all issues relating to epilepsy and pregnancy. Given that up to 50% of pregnancies are unplanned, it is important for women that they are aware of the risks involved. Getting the right message, to the correct audience, in the most appropriate format, is key. Mindful of this, a working group of young women and medical professionals, created by IBE, is producing a multi-faceted toolkit to act as a guide for women of childbearing age. It will be developed to be user-friendly, culturally relevant and visually engaging. It will be available with print, web and social media in mind and with any medical information validated by the medical members of the project team. As a first step in this major campaign, which is being piloted in Europe, a survey was carried across the continent in February with almost 900 women taking part. We are pleased to share with you the main report from the survey, which we believe is of critical importance and which highlights a number of issues of concern with regard to current knowledge and the [...]

2021-11-18T16:19:10+00:00July 14th, 2021|
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International Golden Light Award Winners 2021

Golden Lights at the 34th International 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’. This year 19 worthy candidates, nominated by their chapters, will be presented with their awards during the IBE Day at the 34th International Epilepsy Congress in September. By attending the virtual symposium, you will have the opportunity to hear them recount their remarkable stories and see them receive their award. The IBE Day takes place on Wednesday, September 1st and you can find out more about the programme and how to register at: https://www.ibe-epilepsy.org/ibe-day-2021/ Lynna Held, Germany Lynna is a board member (Vorstandsmitglied) and secretary of Deutsche Epilepsievereinigung (DE). She is dedicated to the development of the self-help-group "Junge DE", for younger members within Deutsche Epilepsievereinigung. Here she involves other young members [...]

2021-09-15T15:28:14+00:00July 6th, 2021|
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IBE Africa Annual Report 2020

Greetings to all; As the Vice President of IBE Africa we want to thank you all for your continued support that you give our team as the African Regional Executive Committee as well as persons with epilepsy. Although in 2020 we were threatened by COVID-19, work continued, and we managed to reach more people together and form new partnerships. We really work so hard indeed to adapt new ways of doing work. A special mention and vote of thanks to our team of Mr. Youssouf Noormamode C.S.K, and Madam Betty Barbara Nsachilwa who devoted all they could to ensure we remain afloat, despite the challenges and all our chapters who have been loyal to raise the flag of persons with epilepsy in Africa. AREC has been working from home at times and working with members online. We are extremely proud of all our loyal members who have been learning new skills to join in. We endeavored to ensure that no person with epilepsy was left out. We are incredibly grateful for the continued support that we are receiving from Band Foundation and now we have three streams of funding to our chapters. New additional chapters than the traditional ones have [...]

2021-06-01T13:46:12+00:00June 1st, 2021|
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IBE Africa Report on the 21 States

WHA Resolutions 68.20 and 73.10 implore all UN Member States to address epilepsy as a public health imperative by developing and implementing global and national action plans on epilepsy. Further, UN Member States are encouraged to reinforce human rights based policies and laws for people with epilepsy at national and international levels through novel strategies. However, on the African continent, very little progress has been made in this regard. In fact, despite several African States committing to international treaties concerning the universal right to health and the protection of the rights of persons with specific health needs, there is still a dearth of unambiguous national policies and laws as well as accompanying monitoring and enforcement mechanisms. This report reflects on how health laws may be used to strengthen the prioritisation of epilepsy in resource-restricted settings, specifically, in the African context. Health laws are defined by WHO as the area of law concerned with the health of individuals and populations, the provision of healthcare and the operation of the healthcare system. Through a health laws mapping exercise, the state of advancement and implementation of resolutions concerning epilepsy can be monitored. Doing so will add value to anticipated evaluation mechanisms stemming from [...]

2021-06-01T13:34:35+00:00June 1st, 2021|
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Register for IBE Day at the 34th International Epilepsy Congress

IBE Day at the 34th International Epilepsy Congress Wednesday 1st September 2021 Time: 07:00 EST, 13:00 CET/CAT, 16:30 IST, 19:00 CST, 21:00 AEST If you are unsure about the start time for where you live, contact us at [email protected] for help. PROGRAMME 1. Making Epilepsy a National Health Priority - intersectoral collaboration Chairs: Mary Secco, IBE Secretary General and Action Amos, IBE Vice President Africa Topics and speakers: 10-year intersectoral global action plan on epilepsy and other neurological disorders (IGAP) Tarun Dua, WHO Brain Health Unit Improving care for children with neurological disorders in resource poor settings Jo Wilmshurst, President International Childhood Neurology Association Improving access to essential medicines Gaby Ooms, Health Action International Putting epilepsy on social policy and development agendas John O'Toole, Division for Inclusive Development, UN Dept of Economic & Social Affairs Leveraging the IGAP to improve care for people with epilepsy Alla Guekht, Chair ILAE Global Advocacy Council Working with donors Gardiner Lapham, Trustee BAND Foundation Epilepsy Advocates Toolkit Karen Robinson, Epilepsy South Africa Global health in epilepsy database Karen Parko, ILAE North America 2. Empowering Youth to Raise their Voices Chairs: Lorraine Lally (Ireland) and Scarlett Paige (Australia), co-chairs of the IBE Youth Team Topics [...]

2021-09-15T09:56:33+00:00May 26th, 2021|
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Asian & Oceanian Golden Light Award Winners 2021

Golden Lights at the 13th 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’. These six worthy candidates, nominated by their chapters, will be presented with their awards during the Epilepsy & Society Symposium at Asian & Oceanian Epilepsy Congress in June. By attending the virtual symposium, you will have the opportunity to hear them recount their remarkable stories and see them receive their award. The IBE Epilepsy & Society Symposium takes place on Sunday 13th June and you can find out more about the programme and how to register at https://www.epilepsycongress.org/aoec/ibe-day/.   Chris Ang, Singapore Chris is a young man with epilepsy who is an extremely dedicated volunteer supporting the cause of Epilepsy Care Group (ECG) Singapore through his active participation in its executive council, [...]

2021-07-02T11:16:39+00:00May 11th, 2021|
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Introducing Deirdre Floyd – Vice President, IBE North American Region

Following the close of the election nomination period, we would like to introduce the incoming Vice President North American Region, Deirdre Floyd. Deirdre will complete the current term of IBE Regional Vice Presidents, which will come to a close at the time of the IBE General Assembly in 2023. I was diagnosed with epilepsy when I was 14 years old and for many years my seizures were relatively controlled. I worked at many different jobs although my true background is in the arts as a production assistant and make-up artist. Over 35 years ago my seizures changed significantly and I had to stop working. My epilepsy specialist suggested I contact the Epilepsy Association of the Maritimes to do volunteer work. Since then, I’ve held many different positions including Fundraising Chair, Vice Chair, and President of the local agency. I have done a significant amount of advocacy work at the local and national levels, including chairing the Purple Day for Epilepsy Campaign that was founded by Cassidy Megan in Nova Scotia, and serving as President of the Canadian Epilepsy Alliance. Until recently I served on the board of the Canadian League Against Epilepsy representing the Canadian Epilepsy Alliance (CEA). Currently I serve [...]

2021-04-23T15:18:00+00:00April 23rd, 2021|
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International Bureau for Epilepsy Logo

The International Bureau for Epilepsy (IBE) was established in 1961 as an organisation of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. The IBE addresses such social problems as education, employment, insurance, driving licence restrictions and public awareness.

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