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„Epilepsie aktiv leben – Anfälle erkennen, beraten und behandeln“ An event (German language) will take place during the European Congress on Epileptology in Vienna in September. The patient forum will see experts serve to inform the population about epilepsy, followed by an open Q&A session. Self-help groups and associations will present their activities and are available for the exchange of information and experience for those affected and relatives. PARTICIPATION IS FREE OF CHARGE More information Download flyer here  

Around 50 million people worldwide suffer from epilepsy, making it one of the most common neurological diseases. To decrease this figure and pave the way for future ground-breaking epilepsy research, seven large EU-funded projects have joined forces. epiXchange 2018 is a unique global community building event, designed to gather a critical mass of epilepsy researchers to exchange about latest progress in research aiming to improve the way epilepsy is diagnosed and treated and thereby increase the quality of life of affected people. Six of these projects were funded through the 7th Framework Programme (FP7) which provided total funding of EUR 52 million. Despite a great progress in the management of epilepsy, 30-40% of epilepsy patients are refractory to all available medications. Moreover, about 50% of children with epilepsy suffer from epilepsy-related co-morbidities, including developmental delay, learning disabilities, and autism spectrum disorder. Diagnostics is another issue. ‘Diagnosis of epilepsy is really difficult,’ explained Prof. David Henshall, coordinator of the epiXchange 2018 co-organising EpimiRNA project. ‘Seizures are the main clinical symptom for the disease but it is very rare that a doctor will witness the patient having a seizure.’ New innovative solutions to diagnose and treat epilepsy As published in HORIZON – The [...]

The 10th Latin American Congress on Epilepsy will take place in San Jose, Costa Rica from September 29th to 2nd October 2018. This biennial meeting, which is a joint collaboration of the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), affords delegates a unique opportunity for face to face interaction with the finest minds in the field. It also allows delegates to gain insight into the latest research and to get in touch with the many colleagues from the region. The call for session proposals is now open and more information is available on the official congress website.

The European Medicines Agency’s experts in medicines safety, the Pharmacovigilance Risk Assessment Committee (PRAC) are recommending new measures to avoid exposure of babies to valproate medicines in the womb. Babies exposed are at risk of malformations and developmental problems. This follows a public consultation that took place recently at the EMA offices in London with IBE participating. Representing IBE were Martin Brodie, President who made an oral presentation, and Caroline Morton, Vice President Europe. For people with epilepsy, the main recommendations are as follows: Valproate must not be used where the patient is pregnant. However, it was recognised that for some women with epilepsy it may not be possible to stop valproate and they may have to continue treatment (with appropriate specialist care) in pregnancy. In female patients, from the time they become able to have children, valproate must not be used unless the conditions of the new pregnancy prevention programme are met. The PRAC has also recommended that the outer packaging of all valproate medicines must include a visual warning about the risks in pregnancy. In addition to boxed text, this may include a symbol/pictogram, with the details to be adapted at national level. A patient reminder card will also [...]

Following recent meetings between members of the IBE/ILAE Epilepsy Alliance Europe Task Force and Members of the European Parliament (MEPs), we are delighted to report that nine MEPs have offered to join the European Advocates for Epilepsy group in the European Parliament. This brings membership of the group to 63 MEPs. The group is led by Brian Hayes MEP, who acts as President of the group, with Nathalie Griesbeck MEP as Vice President. Created in April 2011, the aim of the group is to improve the quality of life of all people with epilepsy, their families, care‐givers and healthcare providers through European Union (EU) policy. Since 2011, the working group has hosted an annual day for epilepsy each February, in addition to accommodation regular workshops on epilepsy related topics. Meetings with the Health and Research Commissions have been facilitated and, during the Irish Presidency of the European Union in 2013, a conference on Epilepsy Research was held in Dublin. In June 2016, 20 members of the group added their signatures to a letter calling on the support of national members for an application for a European Reference Network on Rare and Complex Epilepsies. The support of the European Advocates for Epilepsy [...]

CALLING ALL IBE CHAPTERS IN SOUTH EAST ASIA AND WESTERN PACIFIC REGIONS Is there a young member of your association who has been a shining light for others and who is deserving of recognition? The Regional Committees in South East Asia and Western Pacific are calling for nominations for the IBE Golden Light Awards, to be presented in Bali in 2018 at the time of the 12th Asian & Oceanian Epilepsy Congress. The awards were first introduced in 2004, with the title ‘Outstanding Person with Epilepsy Award’ and have been presented 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 do not have to be defined by their condition and embracing the call of the International Bureau for Epilepsy ‘bringing epilepsy out of the shadows and into the light’. All people living with epilepsy, parents, family members or their carers are eligible to be nominated for this award by their national IBE chapter. However, for 2018, it is proposed to focus the awards on young people. Each chapter member of the South East Asia and Western Pacific Regions is entitled to [...]

Introducing the seven recently elected IBE Vice Presidents, who will represent their regions on the International Executive Committee for the term 2017-2019. Their terms of office will begin at the time of the IBE General Assembly, which takes place at the 32nd International Epilepsy Congress in Barcelona in September. VICE PRESIDENT EUROPE Caroline Morton, Netherlands Mrs Morton has been working in the epilepsy field for more than 25 years. She was first employed as IBE Administrative Assistant when the IBE office was based in Heemstede and worked closely with the late Hanneke de Boer on the ILAE/IBE/WHO Global Campaign Against Epilepsy. Currently she is International Relations Officer at SEIN Epilepsy Centre. She holds a voluntary position as a representative to the UN for the World Federation of Mental Health (WFMH). She is also a member of the IBE Legislation Task Force. VICE PRESIDENT AFRICA Jacob Mugumbate, Zimbabwe Mr Mugumbate is a former Executive Director of the Epilepsy Support Foundation of Zimbabwe. He has also served on the IBE African Regional Committee as a co-opted member. He holds a Bachelor of Social Work and a Masters of Social Work from the University of Zimbabwe. Since [...]

The IBE/ILAE congress awards are presented biennially at the time of the International Epilepsy Congress, to honour individuals who have made significant contributions, over a long period of time and at international level, in the field of epilepsy. There are three categories: Ambassador for Epilepsy - presented to a maximum of 13 recipients; Social Accomplishment, presented to one individual; and the highest honour, Lifetime Achievement Award which, as its name implies, recognises a lifetime of achievement of an individual. Lifetime Achievement Award Presented to: Charlotte Dravet, France This is the highest award bestowed by IBE/ILAE and is given to an individual to recognise his or her exceptional and outstanding personal contribution over a long period of time to activities to advance the cause of epilepsy. Charlotte Dravet, France Although especially known for the epilepsy syndrome that bears her name, Prof Dravet made impressive contributions to our understanding of the clinical and electrophysiological correlates of epilepsy syndromes of childhood. In addition to her clinical expertise and research achievements, Prof Dravet is known worldwide for her humble attitude, tireless work and dedication to the epilepsy mission, including her support to the many lay associations , some made [...]