News

Dear Friends, It is with a heavy heart that we, at the IBE, are following the evolution of the military action in Ukraine.  While all our hopes are directed towards the quickest possible resolution, we cannot help but be deeply concerned for all people suffering from medical conditions and those with epilepsy who are in an inconceivably increased danger from this situation.   Together with our partners in the ILAE, we are mobilizing and liaising with NGOs who can arrange for the urgent supply of anti-seizure medications through humanitarian corridors within the territory of Ukraine.   However, it pains us to realize that this will not be enough because many people need assistance locally, which is lacking, while others are crossing borders and fleeing to countries where they do not know where to access the health care they need.    In these darkest of hours, I am comforted by the empathy and solidarity that is spreading across our epilepsy community. I receive messages from people, families and associations who have offered to help in any way they can; many also living with severe epilepsy. These are messages that remind me how much humanity exists in this world.  Please take a look at the joint statement below [...]

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.

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.

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

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 [...]

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 [...]

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 [...]

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 [...]

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.