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|

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|

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|

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|

‘Making Epilepsy a Health Priority in Africa’ – Utetezi Project Phase 2

BACKGROUND The Utetezi Pilot Project, funded by the BAND Foundation in 2019, provided funding to five African countries to develop the groundwork to create national epilepsy task forces, the development and implementation of national epilepsy plans, and the introduction of educational initiatives to address the recommendations of WHO Resolution WHA68.20. The evaluation of the pilot project has provided direction and opportunities which will be harnessed in phase 2, where we will establish a communication plan, website and tool kit to share best practices. Phase 2 offers a small grants program to enable IBE chapters to develop plans at the national level and to work together to develop and disseminate a regional plan of action. This project is grounded in the core rallying principle of the 2030 Agenda for Sustainable Development – leaving no one behind. During its implementation, and in alignment with the commitment to sustainable development goals of regional governments, effort will be made to identify regional stakeholders to support the project cause. There will be the opportunity also to increase efficiencies and value for money through harmonized operations with the Promising Strategies Program, which are also supported by the BAND Foundation. In addition, the project seeks to complement the [...]

2020-08-04T13:17:40+00:00July 16th, 2020|

IBE and ILAE Joint Statement on Racism

Racism robs. It robs people of their aspirations and, far too often, also of their lives. It robs communities of opportunities and growth. And racism robs everyone of talent, innovation and of dignity. For people living with epilepsy racism adds yet another layer of discrimination to lives that are already made challenging by prejudice and stigma. People living with epilepsy have to navigate, on a daily basis, a myriad of harmful and hurtful myths about their condition and tackle unjust barriers to healthcare, employment and inclusion. Racism compounds this. The International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) are working together to create a world where no life is limited by epilepsy. Both organizations are committed to reducing the unacceptably high gap in access to effective care and treatment for epilepsy that, too often, disproportionately impacts minority groups. Institutional barriers, including racism within the health sector, form part of this challenge. We are determined to tackle these issues in an open and inclusive manner as well as continue to promote the benefits to us all of diversity in all aspects of our lives. Download statement as PDF: IBE and ILAE Joint Statement on Racism

2020-06-30T14:17:18+00:00July 1st, 2020|

BAND Utetezi Project Phase 1 – Final report

This report presents findings of the evaluation of the Utetezi project (supported by Band Foundation) which was implemented in six countries' supporting programs aimed at improving access to health services by people living with epilepsy. The evaluation was carried out in Kenya, South Africa, Mauritius, Zambia, eSwatini and Zimbabwe under the African Regional Committee of the international bureau for epilepsy. The evaluation aimed to identify strengths, weaknesses and provide recommendations for scale-up of the project.   Read the report here   Click here to learn about Utetezi Project Phase 2 - ‘Making Epilepsy a Health Priority in Africa’    

2020-08-04T13:17:59+00:00June 17th, 2020|

International Epilepsy Day 2019 Report published

International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), is a global event celebrated annually on the 2nd Monday of February, to promote awareness on epilepsy right around the world. With IBE and ILAE representation in more than 120 countries, this is a powerful opportunity to highlight the problems faced by people with epilepsy, their families and carers, in every region of the world. Following International Epilepsy Day each year we release a report summarising activities and participation in the day around the world. Click here to read the report of International Epilepsy Day 2019.

2019-03-25T18:03:17+00:00March 25th, 2019|
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