News

EPILEPSY: A public health imperative Coming soon: The first global report on epilepsy and an important milestone in translating the World Health Assembly resolution (WHA68.20) on the global burden of epilepsy into action. It is time to highlight epilepsy as a public health priority, to strongly encourage investment in reducing its burden, and to advocate for actions to address gaps in epilepsy knowledge, care and research. This report is a call for action to ensure that every person with epilepsy has access to the care and treatment they need, and the opportunity to live free from stigma and discrimination in all parts of the world. The burden The burden of epilepsy is high and often neglected on public health agendas. Epilepsy is one of the most common neurological diseases, affecting over 50 million people worldwide of all ages living in countries of all income levels. The risk of premature death in people with epilepsy is up to three times higher than in the general population. Roughly half of adults with epilepsy have at least one other health condition. Psychiatric conditions, such as depression and anxiety, make seizures worse and reduce quality of life. Epilepsy has significant economic implications in terms of [...]

Official epilepsy side event at the 72nd World Health Assembly Wednesday 22 May 2019, 12.30-14.00 Palais des Nations, Room XXIV Co-hosted by: The Russian Federation, China, Colombia, Croatia, Kazakhstan, Mexico, Slovenia, Tunisia and Zambia with contributions from the ILAE, IBE and the WFN For more than 20 years the WHO, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) have joined forces to address the needs of people with epilepsy, promote epilepsy care and research worldwide, reduce the treatment gap and fight stigma. The landmark World Health Assembly (WHA) resolution on the global burden of epilepsy, unanimously approved in 2015, provides strong support to the cause of epilepsy. The resolution urges the WHO Member States to take coordinated action to address the health, social and public knowledge implications of the disease. It also requests that the WHO provide technical support to Member States for epilepsy management, especially in countries with the least access to services and resources, where the burden of epilepsy is greatest. However, the implementation of this landmark resolution is still incomplete. Major gaps in awareness, diagnosis and treatment are devastating the lives of millions of people with epilepsy throughout the world. Persons with epilepsy [...]

  The Scientific Organising Committee of the 13th Asian & Oceanian Epilepsy Congress (AOEC) taking place in Fukuoka, Japan, in October 2020, invite all members of IBE to consider submitting a session proposal for this congress: https://lh6.googleusercontent.com/FQJDXbavvG9ibEBwnjp4qnd77ogU_8waCI2qXFpwu-MvigF-8viy0QjoerNWBBRJZNOtnDOkJQ=w1594 Please note that the submission deadline is the 3rd June. Any enquiries may be emailed to [email protected]

Sharing #LifeGoals has become a popular trend on social media. A campaign from the European Federation of Neurological Associations (EFNA) and supported by the International Bureau for Epilepsy (IBE) will put a new spin on the trend by instead seeing patient advocates and supporters share their #BrainLifeGoals. The #BrainLifeGoals campaign will raise awareness of the impact of neurological diseases by exploring the dreams and aspirations of those living with a brain disorder. Grants available In support of this campaign, EFNA are offering grants, of €2,500 each, to 5 projects which best reflect the theme of the campaign, raise awareness and improve understanding of neurological disorder. Grants will be shared with registered non-profit EU/EEA-based organisations only. Therefore individual applicants should work on their project in association with an appropriately registered patient organisation at either National or European level. Deadline for application is June 14th. For further information and application guidelines please visit: www.efna.net/BLGgrants You can find out more about the campaign itself at www.efna.net/brainlifegoals and by following the #BrainLifeGoals hashtag on social media.

The Australian Coalition Government will commit $20M over four years to support people living with epilepsy, Minister for Health, Greg Hunt, announced on Saturday. The funding will enable the expanded delivery of a range of national epilepsy initiatives that will reduce the chronic health impacts experienced by Australians of all ages living with epilepsy through a new program titled Epilepsy Smart Australia. The national program will ensure people with epilepsy have access to information relevant to their age and condition, that workforces understand epilepsy and appropriately respond to the needs of workers living with epilepsy, ensure children in schools can achieve a better education and reduce demands on hospitals. The program developed by the Epilepsy Foundation will be delivered by Epilepsy Australia, the national coalition of state and territory-based epilepsy service providers. Epilepsy is the most common chronic and serious brain disorder that cannot be cured, currently affecting approximately 250,000 Australians with 1.25 million indirectly affected. This number is expected to grow significantly in coming years due to a sharp increase in older Australians now acquiring this chronic condition. “This is an opportunity for a whole-of-government investment in a much-needed, nationally consistent program that will enable more efficient and better delivery [...]

Is there a young member of your association who is affected by epilepsy, or cares for someone with epilepsy, who has been a “shining light” for others and, so, is deserving of recognition? We are calling on all IBE chapters around the world to submit nominations for the International Golden Light Award, to be presented during the 33rd International Epilepsy Congress in Bangkok in June 2019. Background The award recognises the contributions of people affected by epilepsy in their community and those who care for them and were first presented in 2004, with the title ‘Outstanding Person with Epilepsy Award’. They have been given every two years at each Asian & Oceanian Epilepsy Congress since then. The title of the award was changed to Golden Light Awards in 2016, to recognise the fact that people with epilepsy should not be defined by their condition, thereby embracing the call of the International Bureau for Epilepsy to ‘bring epilepsy out of the shadows and into the light’. Due to the success of these awards, IBE now intends to present them during all regional and international epilepsy congresses. The first of these International Golden Lights Awards will be given during the [...]

The Speakers Brian Hayes MEP Brian Hayes served as a member of Dail Eireann (Irish Parliament) from 1997-2002 and 2007-2014, until his election to the European Parliament in May 2014. He was appointed to three European Parliament Committees - Economic & Monetary Affairs, Development, and Budgetary Control. He is a member of the Delegations to Iraq and South Africa. Martin Brodie Prof Martin Brodie is President of the International Bureau for Epilepsy (IBE) and Co-chair Epilepsy Alliance Europe. His involvement with IBE goes back more than 30 years, having served as a member of its board from 2005 to 2009. His research interests include antiepileptic drug neuropharmacology, randomised clinical trials, prognostic outcome studies, management of epilepsy and factors affecting antiepileptic drug response. Francesca Sofia Dr Sofia is a molecular biologist with a PhD in neuroscience. She specialized in healthcare economics and policy as a research program manager for an Italian health foundation, dedicated to rare genetic diseases. Her career path changed when her youngest daughter was diagnosed with a rare form of epilepsy, in 2011. In July 2014, she joined the Italian Epilepsy Federation with the aim of fostering epilepsy research. Recently, she [...]

To coincide with International Epilepsy Day, Scottish production company Storm Features today launched an experimental online magazine called A Life Electric. For the past year a Scottish visual journalist has been collecting stories about epilepsy inspired by the death of his brother to the illness. Fraser Morton, 36, from Edinburgh, has traveled to India, Indonesia, Australia and has found stories as far afield as Bangladesh, Pakistan, Mongolia, San Francisco, as well as in the United Kingdom. His brother Blair died aged 19 due to Sudden Unexpected Death By Epilepsy (SUDEP), a condition where no other cause of death can be found, so a fatal epilepsy seizure is suspected. In the UK, 21 people each week die from the condition. Morton has launched an experimental online magazine exploring epilepsy and is currently producing a feature documentary to tell the contrasting stories of people living with epilepsy in 2019. The project is called A Life Electric and comprises of an online magazine with documentary film and book of the same name. The self-funded online magazine A Life Electric can be viewed here www.alifeelectric.org    

As part of our International Epilepsy Day celebrations for 2019, we invited you to enter a video competition. The competition, open to everyone, had two categories: My Personal Story and Educational Video. Winning videos have been selected based on their success in telling an inspiring personal story or in using a novel means of increasing knowledge and awareness of epilepsy. In each category, there is one 1st Prize of US$500 and five Runners’ Up prizes of US$100. We are delighted to announce the winners, below:   Category 1: My Personal Story 1st Prize Winner: Linda Cambell (Scotland), ‘Zoned Out’ Runners Up: Farah (Fatemeh) Abbasi Siar (Iran), ‘My Dream is a world without war’ Ng, Wai Hung (Hong Kong), ‘A Big Boy Story’ Delyma Asnydar SS (Indonesia), ‘A Sweet And Short Journey of An Epilepsy Warrior’ Yvette Barrera-Molina (USA), ‘Some Super Heros Fight Crime, Mine Fights Epilepsy’ Jess McCallum (Australia), ‘Jess McCallum She Beast’ Watch the Category 1 Runner Up videos here   Category 2: Educational Video 1st Prize Winner: Epilepsy Foundation (USA), ‘Taking Charge of the Storm Jr.’ Runners Up: Cairo University Epilepsy Unit (Egypt), Pregnancy Awareness Norsk Epilepsiforbund (Norway), How to handle an epileptic seizure Epilepsy Action (UK), Ali’s story: taking my medicine Youth on the Move (Kenya), [...]