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Anita Mago’s Covid-19 Story

My heart was racing because of the urgency to get a store of medications which are always hard to afford and rare to find. It all started like something unreal when I first heard about Covid-19. It was so far away in China and it had killed a lot of people. As we monitored the news, Covid had spread to other parts of the globe and countries had started to lockdown their social lives. My first thoughts and worry were about for my daughter. Not that she was in any of the countries where cases had been reported: she was here in Uganda with me; but she has epilepsy. My heart was racing because of the urgency to get a store of medications which are always hard to afford and rare to find. My daughter was equally worried and this raised her anxiety. Those who are caregivers like me will appreciate what I was going through and for those who have never experienced a near to no supply of life long medication, it would be hard for me to explain. Every single medication was tripled in price and this was very frustrating. I walked from pharmacy to pharmacy and could not [...]

2020-07-21T20:16:27+00:00July 21st, 2020|
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Vinod Saxena, RIP

It was with great sadness that IBE learned earlier today of the sad passing of Dr Vinod Saxena. From India, Vinod served as IBE Vice President Western Pacific Region from 2009 to 2013 and was a member of the IBE Regional Committee Western Pacific for several years. As a member of the board, he was held in high esteem for his insightful contributions, delivered always with courtesy, diplomacy and, usually, a little wit. His love of life was infectious and his kindness to others did not go unnoticed. He was dedicated to supporting people with epilepsy to achieve the best possible quality of life and for his exemplary work he received the Ambassador for Epilepsy award in 1991. It was fitting that the award was bestowed during the 18th International Epilepsy Congress, which was held in his home city of New Delhi. IBE would like to extend its sincere sympathy to his family with the hope that memories of happier times will help them through the difficult days that lie ahead. May he rest in peace.

2020-07-21T14:18:30+00:00July 21st, 2020|
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‘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|
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Share your COVID-19 story

Dear Friends, It is now more than six months since the world began to hear about COVID-19 and four months since the first country in Europe, Italy, announced lockdown in its bid to fight the virus. Less than three weeks later, our countries – Scotland and Ireland - entered lockdown. Since then, the pandemic has quickly spread westwards and now, as Europe begins to come back to normal, the Americas are still seeing huge numbers of new cases daily, accompanied tragically, by a high numbers of deaths. The world we are now emerging into will be vastly different to how it was before we were marooned in our homes. Many of us still have to view our friends as potential enemies, keeping them at distance with no room for affection. We may have to don face masks whenever we leave our homes and search for hand sanitizers wherever we go. If, how and when, the world will return to anything like the old normal are questions that cannot be answered at present. However, we can now spend some time reflecting on how we coped with the arrival of COVID-19, how it affected our lives, and how it has made us see [...]

2020-07-16T15:41:30+00:00July 16th, 2020|
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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|
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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|
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Epilepsy awareness advocate Erin Davies joins EPF Youth Group

Erin Davies Congratulations to Erin Davies, a young epilepsy awareness advocate from the UK, who has become a member of the European Patients' Forum (EPF) Youth Group. Erin attended the IBE's Young Adult Summit in Dublin last year. The EPF Youth Group is made up of young patient representatives between 15-29 years old. They all have different chronic conditions and they come from all over the EU. The aim of the EPF Youth Group is to become the reference group of the young patient community and its role is to communicate the needs and expectations of young patients to EPF and its members. Erin is originally from Wales but is based in Belfast. She was formally diagnosed with epilepsy in 2013 and has been an epilepsy awareness advocate for almost 5 years, working alongside Epilepsy Action and the International Bureau for Epilepsy. She's employed by a humanitarian organisation as a Recruitment & Selection Co-ordinator and is passionate about the promotion of diversity and inclusion.

2020-05-20T15:31:55+00:00May 20th, 2020|
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Marking the retirement of Richard Holmes as IDM

Dear Friends, As you may know, Richard Holmes recently retired as International Director of Meetings (IDM) for IBE and ILAE. Richard Holmes I first met him when we both were members of the scientific and organising committees for the Epilepsy Europe Congress that took place in Glasgow back in 1992. The success of this meeting led to the setting up of the biennial ILAE European Congresses on Epileptology, the first of which was in Oporto, Portugal in 1994. The same year, in parallel, IBE held its own European Congress on Epilepsy and Society in Veldhoven, Netherlands. When I became Chair of the ILAE Commission on European Affairs in 1997, Richard, who was by then IBE President, was appointed as a member of my team. Following my election as ILAE Vice President in 2011, I was tasked by the then president, Giuliano Avanzini, with developing joint regional congresses in Europe, Latin America and Asia and Oceania. This led to my working closely with Richard for an interesting 4 years, since he was by that time the IDM for both organisations. We carried out onsite inspection visits to Mexico City, Guatemala, Bali, Bangkok, Kuala Lumpur, Madrid, Vienna, Helsinki, and Xiamen. During [...]

2020-05-20T13:59:05+00:00May 20th, 2020|
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Message from the IBE President (April 27, 2020)

Dear Friends, It has been just a month since I last wrote to bring you the news on some of the changes being introduced by IBE due to the Covid-19 pandemic. At that time, I mentioned that 2 million people had been affected around the world, with 135,000 deaths. In a matter of just four weeks, those numbers have risen by 50% with few real signs of an early exit in sight. It is likely that life will not return to normal for many more months with social distancing continuing in some form for the foreseeable future. Martin Brodie, IBE President I advised you at the end of last month that IBE was still open for business, albeit with some changes and restrictions, and this still holds true. We now have a dedicated section on our website www.ibe-epilepsy.org/covid-19-epilepsy-information/ with information on Covid-19 from sources, including WHO, FDA and EMA, as well as information specific to the virus and epilepsy. Some chapters have answered our invitation to share their information with us and these links are also available on the website. If you or your organisation has created material specific to Covid-19 and epilepsy, we would love to hear from [...]

2020-04-27T10:36:11+00:00April 27th, 2020|
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Message from the IBE President (March 26, 2020)

Dear Friends, When I wrote my last message to you for IE News, the world was in a very different place. Since then, everything has changed. We have watched in horror as first China and then most of the rest of the world has been invaded by COVID 19, a virus to which none of us has immunity. As I write, close to half a million people worldwide have been infected, but it is likely that there are also a large number of unidentified cases. Almost 19,000 people have died, and this number grows daily. Martin Brodie, IBE President How long this virus will continue to plough an unchecked course through the world’s population before we have a weapon such as a vaccine with which to fight it, is not known. And when we do come out at the other end of this nightmare, the world will be a very different more nervous place. In the meantime, we must all take all the precautions to which we are directed by our national governments in order to safeguard ourselves and our loved ones. If you have epilepsy or care for someone with epilepsy, you are probably aware that there is [...]

2020-04-27T10:35:03+00:00March 26th, 2020|
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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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