WHO’s Executive Board approves draft IGAP

On 27 January 2022, at the 150th session of the World Health Organization Executive Board, the draft Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) was adopted. The draft IGAP will be presented to the World Health Assembly for final approval by all Member States in May 2022. The full discussion on IGAP, can be accessed via this link - where you will also hear IBE deliver its statement. You can read our statement here or access our full position paper here. Thank you to the following Executive Board members who were vocal in their support of the IGAP: Japan, Malaysia, Oman, Russian Federation, the Philippines and Tunisia. Other Member States who showed support were: Australia, Botswana, Brazil, Burkina Faso, China, Ghana, Grenada, Guinea-Bissau, India, Israel, Jamaica, Kenya (on behalf of all African member states), Madagascar, Rwanda, Thailand, the UAE, the UK and the USA.

2022-03-02T16:42:35+00:00March 2nd, 2022|

A step closer to a Global Action Plan on Epilepsy

IBE applauds the final draft of the 10 year intersectoral global action plan on epilepsy and other neurological disorders. The draft - available here - will now be discussed at a meeting of the Executive Board of the World Health Organisation. IBE encourages its chapters and partners to contact their national health ministries to ask for their support of this ambitious plan. Once approved by the Executive Board in late January, it will then only require final ratification by the World Health Assembly in May. We feel this a major opportunity for epilepsy to become a global public health priority in the next ten years, and to provide an example for other neurological disorders to follow. Major challenges such as stigma and discrimination, as well as access to treatment and care, will be addressed by this plan - which is committed to engaging people with epilepsy in its implementation. The IBE Position Statement on the draft iGAP can be found here. If you would like to further support this work and need more information, please contact us.

2022-01-19T17:37:04+00:00January 19th, 2022|

International Epilepsy Day – Share a little love!

International Epilepsy Day AND Valentine's Day! Monday, February 14, 2022 In 2022 International Epilepsy Day will takes place on Monday, February 14 - a day celebrated in many parts of the world as Valentine's Day! Valentine's Day is a day when it is traditional to show love for one another so let's take this opportunity to show our love for the epilepsy community around the world! To help celebrate the day, we have created a selection of resources that you can use, including posters and graphics for social media. Template files are available so that you can edit these resources and translate them into your own language. If you are a member of a group or organisation and are planning to hold an Epilepsy Day event we would love to hear about it. Share your event information with us and we'll add it to the internationalepilepsyday.org website's calendar of international events. Visit the International Epilepsy Day website

2022-01-18T17:31:47+00:00January 18th, 2022|

50 Million Steps for Epilepsy – 2022 Campaign

The #50MillionSteps campaign is back!The 50 Million Steps for Epilepsy campaign launched in 2021, with great success. Our target of seeing a step taken for each person living with epilepsy in the world was smashed, with almost 165,000,000 steps achieved!Let's take our awareness raising even further in 2022!!Starting today, Monday, January 10 and ending on International Epilepsy Day – Monday February 14, we’re walking to raise awareness, improve visibility and increase understanding of epilepsy.Your walk could also be an opportunity to raise vital funds for your local or national epilepsy support association! Why not aim to raise $1 for every 1,000 steps you take? You can donate directly to any of the many associations listed on the 50MillionSteps.org website, from across the world.Will you walk with us and add your steps to our grand total?You can add your steps using the Step Counter on the 50MillionSteps.org website homepage.#50MillionSteps for Epilepsy Campaign ToolkitsDownload the 2022 campaign toolkits for resources and tips on taking part:Toolkit for individual advocatesToolkit for IBE ChaptersSpanish language toolkitPlan a #50MillionSteps event in your areaOrganisations and individuals are encouraged to plan events and count their steps together. Share the event details with us and we’ll help promote it!Share photos [...]

2022-01-18T15:18:59+00:00January 18th, 2022|

Women and Epilepsy – A new website from IBE

Having a baby is an exciting time, full of wonderment, anticipation and joy. But for women with epilepsy, becoming pregnant and having a baby is a little more complicated. For this reason, the International Bureau for Epilepsy (IBE) has developed a new website - womenandepilepsy.org - as part of a wider project on this topic.A campaign informed by real-world needsTo help us identify which information women with epilepsy want and where there are information gaps, we surveyed almost 900 women across Europe. Their personal insights have been vital in developing the website to empower women with epilepsy to talk with their medical care providers and get the medical support and advice they need.Women have to contend with additional issues, but information is power, so we're providing all the information a women with epilepsy will need to know about pregnancy, hormones, sex and more.We hope to expand this critical campaign to other global regions of the world.Visit the WomenAndEpilepsy.org website here.Working group members:Professor Gus Baker (Chair), Mrs Ann Little (Co-chair), Mrs Tea Bobinac-Krivacic, Prof Martin Brodie, Mrs Elizabeth Cunningham, Ms Erin Davies, Prof Joanna Jedrzejczak, Mrs Barbora Jones, Dr Lieven Lagae, Ms Lorraine Lally, Prof Janet Mifsud, Dr Barbara Mostacci, Dr Natela [...]

2022-01-18T14:40:09+00:00January 18th, 2022|

International Epilepsy News – Issue 4, 2021

After 25 years working at IBE and 15 years as Editor of IE News, this is a sad moment for me as I pen this, my final message to you as IBE Executive Director and IE News Editor. All good things must come to an end and on 31st December I will retire. This last editor’s message is, therefore, the opportunity for me to say Thank You to all the wonderful people I have met through my time working for IBE. Although, as the saying goes, if you enjoy what you are doing, you will never work a day in your life! Working for IBE has provided an open window through which to witness the struggles, efforts and undaunted bravery and commitment shown by people right across the world as they work to improve the lives of people with epilepsy - whether as a parent, sibling, healthcare provider, or chapter employee. In traveling to regional and international congresses and on the invitation of chapters, I have also been privileged to meet countless people with epilepsy who never allow their diagnosis to hinder them from striving to achieve their dreams; they are truly inspiring and I will never forget them. Finally, I [...]

2022-01-26T14:16:48+00:00December 26th, 2021|

Introducing Donna Walsh, Incoming IBE Chief Executive Officer (CEO)

Dear Friends, I am pleased to announce that IBE has appointed Donna Walsh as Incoming IBE CEO who will take over from our Executive Director, Ann Little, who is retiring on 31st December 2021. Donna joins IBE from the European Federation of Neurological Associations (EFNA), where she has worked as Executive Director since 2012. At EFNA, Donna was responsible for overseeing the development of its new strategic direction, and also led in the creation and implementation of its annual workplan, projects and activities. This included keynote initiatives such as the OneNeurology Partnership, the MEP Interest Group on Brain, Mind and Pain and the Training Initiatives for Neurology Advocates. Donna has also been active in representing EFNA and the neurology patient community externally, including as a member of the European Affairs Sub-Committee at the European Academy of Neurology, a Board Member of the European Brain Council and a member of the WHO’s NeuroCovid Global Forum. She is also regularly invited, as a patient leader, to join initiatives of the pharmaceutical industry – such as the Lundbeck Institute Neuroscience Faculty, the Roche Personalised Healthcare Council and the Steering Committee of the EFPIA Patient Think-Tank. Donna has also moderated and chaired many events for [...]

2021-10-20T10:36:16+00:00October 20th, 2021|

A farewell message from Ann Little, IBE Executive Director

It is with a mixture of gratitude and sadness that we announce the departure of our Executive Director, Ann Little.  Ann will step down from her role at IBE on December 31st, following 25 years of service. Over those 25 years Ann has been central to IBE's activities and instrumental to the organisation's growth. Her contribution has been immeasurable and she leaves a lasting legacy. We hope you will join us in extending our thanks to Ann and in wishing her every happiness in her upcoming retirement.   It’s difficult to believe that I am in my 25th year at IBE, having joined in 1997. We all know the saying that ‘if you enjoy what you are doing, you will never work a day in your life’. And this is true for my time at IBE, which now draws to a close as I begin my retirement. Over the course of those 25 years, I have been honoured to work with five boards, led by dedicated Presidents, whose efforts have seen the introduction of a wide range of initiatives, each one developed to address IBE’s mission to improve the quality of life of people with epilepsy and their care providers. As [...]

2021-10-20T10:34:32+00:00October 20th, 2021|

President to President – Conversation with IBE Presidents Martin Brodie and Francesca Sofia

IBE Presidents past and present discuss their work and goals In July 2021, IBE's Past President Martin Brodie and President Francesca Sofia, took part in an interview with the ILAE. Watch the complete interview video above to hear what led Martin and Francesca to their roles, discussion of their achievements, hopes for the future of epilepsy advocacy and views on collaboration between IBE and the ILAE. Alternatively you can visit the 'President to President' playlist on our YouTube Channel to watch individual segments from the interview.  

2021-10-06T15:02:18+00:00October 6th, 2021|

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|
Go to Top