News

Epicare ERN has launched a series of educational webinars with #epilepsy related topics presented by internationally renowned experts. The webinars are scheduled for the third Thursday of the month at 4pm GMT. The online seminars are free to attend but require previous registration. 2020 Webinar Schedule 27 Feb THU 17:00 -18:00 CET Katarzyna Kotulska et al: TSC-related epilepsy https://register.gotowebinar.com/register/5915017819582901005 26 March THU 17:00 -18:00 CET Cecilie Johannessen Landmark : Therapeutic drug monitoring of antiepileptic drugs https://attendee.gotowebinar.com/register/7224411923450947084   23 Apr THU 17:00 -18:00 CET Albert Becker, Tobias Baumgartner, Christoph Helmstaedter, Rainer Surges : Diagnosis, treatment and prognosis of limbic encephalitis https://register.gotowebinar.com/register/4163457313629685772   28 May THU 17:00 -18:00 CET Milan Brázdil: Epileptic seizure semiology: What can be inferred from ictal behavioural manifestations for clinical practice? Temporal lobe epilepsy https://register.gotowebinar.com/register/1005115660401427980   25 Jun THU 17:00 -18:00 CET Sameer Zuberi: Diagnosis and treatment of epilepsy related to Ring Chromosome 20 Syndrome https://register.gotowebinar.com/register/7192765779780856332   30 Jul THU 17:00 -18:00 CET Sándor Beniczky: Role of EEG in diagnosis and management of status epilepticus https://register.gotowebinar.com/register/3220936155091248652   27 Aug THU 17:00 -18:00 CET Kari Modalsli Aaberg: Epidemiology in childhood epilepsy https://register.gotowebinar.com/register/4694836989683140364 24 Sep THU 17:00 -18:00 CET Joseph D Symonds:: Incidence phenotypes and outcomes of epilepsy <3 years: a [...]

On 9th of April 2019 I received an email that would allow me to advocate for epilepsy on an international scale with it I can help epilepsy get the respect it deserves and hopefully people living with it accepted not judged. The email was from Ann Little who is the Executive Director of the International Bureau of Epilepsy, congratulating me on my success of overcoming my own personal journey with epilepsy, as well as the many voluntary hours I have put into helping others right across Australia going along the same at times a very confronting epilepsy journey. The email stated that for the first time International Bureau of Epilepsy would be acknowledging 8 recipients from each of the their World Regions. These acknowledgements would be named the Golden Light Awards to bring a shining light to those who have turned their epilepsy in to the power of helping others. The awards would be presented in Bangkok at the 33rd international congress along with the receiving our awards we would each give a presentation telling our story. From the moment the 8 of us met in Bangkok there was an instant connection that we had known each other all our lives [...]

In October 2019, the IBE plans to hold the ‘Hear My Story’ workshop for young adults with epilepsy living in Europe. The event will run over a weekend, from Friday 4th to Sunday 6th, and will gather 20 young adults from across Europe who are personally affected by epilepsy. These young adults may have a diagnosis of epilepsy or may be impacted by a parent or sibling having epilepsy. Why? In Europe, IBE represents 57 associations (our chapters) in 37 countries. There is wide recognition amongst our chapters that young people are currently under-represented in their associations. This poses the risk of undermining the future potential of epilepsy associations or, at worst, putting their very future in jeopardy. It is also felt that the issues facing young people affected by epilepsy are not getting the public or political attention they should. Yet the diverse range of experience and the remarkable personal resilience that a large number of young people with epilepsy already demonstrate is going unnoticed because many feel ill-equpped to report on their achievements. Those living with epilepsy face a number of additional burdens as young people. At times, they are unable to complete their education to [...]

An Australian-first telephone and email service to support people living with epilepsy and their families has been launched today by Epilepsy Action Australia, the country's longest serving provider of education and support services to people with epilepsy. The Epilepsy Nurse Line, which is available from 9am to 5pm seven days a week in all Australian states and territories, has been funded by the Australian Government Department of Health, addressing a condition that the World Health Organisation (WHO) refers to as 'neglected'. WHO also declared that addressing the quality of life of people affected by epilepsy is a public health priority. Carol Ireland, CEO of Epilepsy Action Australia, said, "The Epilepsy Nurse Line has been developed specifically to improve health outcomes for people affected by epilepsy. Each call will be answered by a Registered Nurse with special training in epilepsy management, so callers can trust that the information they receive will be accurate and safe." Minister for Health, Greg Hunt said, "People living with epilepsy in Australia now have a trusted and responsive resource they can count on for all kinds of information related to their condition. "The Epilepsy Nurse Line will greatly reduce the amount of time it would otherwise take [...]

2019 Lifetime Accelerator Award Winner Dr. Martin Brodie At the 2019 Antiepileptic Drug & Device (AEDD) Trials conference in Florida, on May 24th, the Epilepsy Foundation awarded the Epilepsy Lifetime Accelerator Award to Professor Martin J. Brodie, M.D., president of the International Bureau for Epilepsy. Dr. Brodie has been involved in epilepsy drug development for more than 30 years and was principal investigator on numerous trials that brought new therapies to market. He was an innovator of novel trial designs and is arguably the most recognized speaker on new anti-epileptic drugs in the world. The Epilepsy Foundation also awarded a total of $200,000 in grants to two finalists who competed in the 8th Annual Shark Tank Competition.  Inspired by the television show "Shark Tank," the Epilepsy Foundation's annual competition invites entrepreneurs from around the world to pitch their products and compete with five other finalists for funding. The winners, selected by a panel of "sharks," will use the funding in the development and commercialization of a new product, technology, or therapeutic concept to benefit the epilepsy community. "Given the enormous impact that seizures have on people living with epilepsy, there is an urgent need to develop more diagnostic tools [...]

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.