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 [...]

2023-03-28T06:24:18+00:00September 13th, 2022|

Advocate’s Toolkit for Making Epilepsy a Priority in Africa

WHO THIS TOOLKIT IS FOR AND HOW TO USE IT This toolkit is for organisations looking for guidance, ideas, or inspiration as they develop advocacy projects around epilepsy. Generally, the toolkit is aimed at civil society organisations working across Africa and has been heavily influenced by the needs and experiences of such organisations. The various modules and topics addressed in this toolkit can be used both as a step-by-step guide to lead you through a brand new advocacy planning process, or as a reference or set of stand-alone resources that can be used when encountering a problem or opportunity in the context of existing epilepsy advocacy work. It is meant to be versatile and useful to a variety of audiences. Download the Toolkit here   HOW THE TOOLKIT WAS DEVELOPED This toolkit was developed with input from key stakeholders, including persons with epilepsy and their families, IBE chapters across Africa and headquarters representatives, and input from others with a connection to epilepsy either personally or through an organisation. Through an initial needs assessment, stakeholders provided their perspectives on resources that were currently available to them, best practices they wanted to share, areas where they were seeking support, and opportunities for additional [...]

2021-09-09T16:31:14+00:00September 9th, 2021|

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|

Petition from African Youths with Epilepsy

PETITION FROM AFRICAN YOUTHS WITH EPILEPSY & THEIR FRIENDS TO: MINISTERS OF HEALTH & PARLIAMENTARY COMMITTEES OF HEALTH ACROSS AFRICA 20th October, 2020 Download the petition in English Download the petition in French Download the petition in Portuguese We the youths with epilepsy from Africa and our friends gathered here in a virtual meeting on the 20th of October, 2020 would like to send this petition to you Honorable Ministers of Health and Parliamentary Committees on Health, so that you can realize the need for you to support and endorse the World Health Assembly Resolution 68.20 on Global Action on Epilepsy and Its Synergies with Other Neurological Disorders during the 73rd World Health Assembly. Epilepsy is one of the major brain disorders thought to affect more than 10 millions Africans. Sometimes called a seizure disorder, epilepsy is a chronic medical condition produced by a temporary change in the electrical function of the brain, causing seizures which affect awareness, movement or sensation. The disorder affects people in all nations and of all races. Left untreated, like any other disease, it could impede the social development of the patient. Treatment for epilepsy is available, effective and cheap. Indeed, it is estimated that 70 [...]

2020-10-21T12:27:09+00:00October 21st, 2020|

Former President of Malawi calls for support of WHA Resolution on Epilepsy and Other Neurological Disorders

Former President of Malawi, Dr. Joyce Banda, encourages people to support the World Health Assembly Resolution 68.20 on Global Action on Epilepsy and Its Synergies with Other Neurological Disorders during the 73rd World Health Assembly. The WHA68.20 resolution urges Member States to address the global burden of epilepsy and the need for coordinated action at the country level to address its health, social and public knowledge implications and requested WHO to provide technical support for epilepsy management, especially to countries with the lowest access to services and resources where the burden of epilepsy is greatest.

2020-10-21T11:02:01+00:00October 21st, 2020|

‘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|

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|

Global Report – Epilepsy: a public health imperative

Epilepsy is a brain disease characterized by abnormal electrical activity causing seizures or unusual behaviour, sensations and sometimes loss of awareness. It carries neurological, cognitive, psychological and social consequences and accounts for a significant proportion of the world’s burden of disease. Despite availability of effective and low-cost anti-seizure medicines, more than 75% of people with epilepsy in low-income countries do not have access to treatment. This report is the product of a long-standing collaboration between WHO and leading nongovernmental organizations working in the area of epilepsy, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Together we have made substantial progress in encouraging countries to prioritize epilepsy in public health agendas. Epilepsy: a public health imperative presents a comprehensive picture of the impact that the condition has on people with epilepsy, their families, communities and societies. Epilepsy has a high risk of disability, psychiatric comorbidity, social isolation and premature death. Across the world, people with epilepsy and their families suffer from stigma and discrimination. Many children with epilepsy do not go to school; adults are denied work, the right to drive or marriage. The human rights violations faced by people with epilepsy around the world are unacceptable. [...]

2019-09-26T15:35:32+00:00June 20th, 2019|

Approval of the Epilepsy Resolution by the World Health Assembly: A Historical Landmark

[Pictured from Left to Right] Athanasios Covanis - President IBE, Shekhar Saxena -WHO, Shichuo Li (China), Brooke Short - WHO, Ann Little, Executive Director IBE (Ireland),  Mary Secco, IBE (Canada), Tarun Dua - WHO,  Emilio Perucca - President ILAE,  Alla Guekht, ILAE (Russia) Tuesday 26, 2015, will be remembered as a historical date for all of us. On that date, the World Health Assembly approved the WHO Resolution on the Global Burden of Epilepsy (click to view resolution), which calls for Member States to: strengthen effective leadership and governance to address the specific needs of people with epilepsy, and make resources available as necessary to implement evidence-based plans and actions; introduce and implement national health care plans of action for epilepsy management, aiming to overcome inequalities and inequities in health, social and other related services; integrate epilepsy management into primary health care where appropriate to reduce the treatment gap, by training non-specialist health care providers and by empowering people with epilepsy and their carers for greater use of specified self and home care programmes; improve accessibility to and promote affordability of safe, effective and quality-assured antiepileptic medicines; ensure public awareness of and education about epilepsy, in particular in primary and secondary schools, [...]

2019-09-26T15:39:44+00:00May 30th, 2015|
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