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Hanneke de Boer, RIP 1946 - 2015 It is with tremendous sadness that IBE announces the passing of Hanneke de Boer on Monday 12th October, following a long illness. Hanneke was truly one of the greatest and longest serving advocate for people with epilepsy – not only in her beloved native Netherlands, but right across the world. Hanneke began her professional life as a vocational consultant at Stichting Epilepsie Instellingen Nederland (SEIN) in Heemstede, the Netherlands in 1965 and would continue to work there almost to the end of her life. Her main interest was in empowering people with epilepsy to find gainful employment by working with both people with epilepsy and employers. However, hers was always the personal touch, and it was not unknown for her to provide ‘out of hours’ support to those struggling with their education courses. Hanneke first became involved with IBE when she became Editor of IE News in 1985 becoming a member of the Executive Committee. She became Secretary General in 1989 and served as President from 1993 to 1997 and Past President from 1997 to 2001. The achievement of which she was most proud was the launch of the ILAE/IBE/WHO Global Campaign Against Epilepsy ‘Out of the [...]

It is with great pleasure that IBE welcomes the acceptance of two new Chapters. The new member associations are: MOLDOVA - Full member The Association Of Supporting Children With Special Needs Visit the website of AOSCCS www.asccs.md/en ITALY - Associate member Italian Federation Epilepsies Visit the website of FIE www.fiepilessie.it This brings the number of IBE Chapters to 98 and Associate Chapters to 37. IBE is now represented in 100 countries worldwide. [divider style="shadow"] IBE Chapter Details To view the details for each IBE Chapter, please choose from the following regions below View contact details for Chapters in the African region View contact details for Chapters in the Eastern Mediterranean region View contact details for Chapters in the European region View contact details for Chapters in the Latin American regions View contact details for Chapters in the North American region View contact details for Chapters in the South East Asian region View contact details for Chapters in the Western Pacific region CLICK ON IMAGE TO TO ENLARGE

The general objective of the pan-European research project, ESBACE (European Study on the Burden and Care of Epilepsy), is to facilitate the development of high-quality epilepsy care at all stages of the disease, equitable across EU countries. ESBACE will provide data on the burden of epilepsy and on current provision and organization of care in selected EU member states. ESBACE has established a consortium of 10 centres as associate partners, with a further 9 collaborating centres to drive this project. ESBACE Objectives The specific objectives of ESBACE are as follows: Provide data on the prevalence of epilepsy in European countries Provide information on the cost of epilepsy in European countries Provide information on the stigma and quality of life of people with epilepsy Provide information on the coordination of services for patients with seizures, through an audit that ascertains patients attending emergency services Provide an update on provision and organization of epilepsy care in Europe Disseminate to health care providers and decision makers information on the burden of epilepsy in Europe, and of deficiencies as well as examples of good quality care  DOWNLOAD THE FULL ARTICLE HERE

  Rasmussen,   Dr Theodore Ravnik,   Dr Igor Rektor, Dr Ivan Reynolds,   Prof EH Richens,   Dr Alan Robb,   Dr Preston Robinson,   Dr Lenna-Belle Rodin,   Dr EA Rodriguez, Dr Jorge Sanchez Roger,   Prof J Ruberti,   Prof Renato F Rubio-Donnadieu,   Dr Fr Ryvlin, Philippe S Sander,   Prof JWAS Satishchandra, Dr Parthasarthy Santilli,   Mrs Nancy Saxena,   Dr Vinod S Schachter,   Dr Steven Scheffer, Dr Ingrid Scherer,   Mrs Ann Schilarski,   Dr Marie-Luise Schmidt,   Dr Dieter Schoenberg,   Dr Bruce Schwartzkroin,   Dr Ph A Seino,   Dr Masakazu Senanayake,   Dr Nimal Servit,   Prof Zdenek Seyffert,   Mr J Shah,   Dr Pravina Shorvon,   Dr S Sillanpaa,   Dr Matti Somerville,   Dr Ernest Sonnen,   Dr AEH Sorel,   Prof Lucien Spencer, Dr Dennis Stefan,   Dr H Tan,   Prof CT Tanaka, Tatsuya Tassinari,   Prof CA Theodore,   Dr William Thomas,   Dr Madison Thomas, Sanjeev Thompson,   Mrs Pamela J Thorbecke,   Mr Rupprecht Tinuper,   Dr P Tits,   Mlle Millie Tomson,   Dr T Tower,   Dr Donald Trimble,   Dr Michael R Trinka, Prof Eugen Troxell,   Mr Jim Tsai,   Dr [...]

State of the Art and Opportunities for the Future The event will gather together all EU-funded and currently ongoing research projects specifically focused on epilepsy. Several laboratories and research institutions in Europe are supported from the EU for research on the mechanisms of epileptogenesis and on the development of new therapies. Currently, six projects are receiving funds from the EU and they account for a total EU investment of about 70 million euros. Coordinators and partners of each project will be invited to present their results and future aims and so will provide a vision of EU epilepsy research highlighting the areas of promising developments. On the occasion, major international funding agencies both public and private will be invited to present their portfolios of research-funding initiatives. Amongst the esteemed speakers, will be IBE Secretary General, Sari Tervonen, who will present the topic - "Promoting Epilepsy Care and Research" The aim of the event is to build a framework for epilepsy research in Europe and to identify opportunities for the future. To view the Full Programme and Registration details PLEASE CLICK HERE Click Image to Download

The Lancet published the following article. Volume 385, No. 9967, p482, 7 February 2015 A voice for people with epilepsy Feb 9, 2015, will be the first International Epilepsy Day—a collaborative effort between The International Bureau of Epilepsy (IBE) and the International League Against Epilepsy (ILAE) to raise awareness and encourage discussion about epilepsy. Such efforts are urgently needed—more than 50 million people worldwide have epilepsy, more than 75% of whom live in low-income countries. In 2013, 119 000 deaths worldwide were attributable to epilepsy, and only one other disorder (HIV infection) has greater disability weight than uncontrolled, severe epilepsy. What causes this high burden? 40% of patients in high-income countries and more than 70% of patients in developing countries do not get the treatment they need, because of the high expense or low availability of appropriate drugs. Additionally, epilepsy is still a stigmatised disease—false beliefs that people with epilepsy are disabled or mentally ill are common. In developing countries, the stigmas can be even more profound because epilepsy is thought to be contagious and associated with witchcraft; many people avoid touching patients during seizures, when simple forms of care could prevent dangerous situations. Opportunities for marriage and employment are also severely [...]

urkish Association of Travel Agencies confirms that Turkey is s safe destination for tourists and the final plans for the 31st International Epilepsy Congress are put in place. Istanbul promises to provide an excellent venue for the congress. Read the letter issued by the Turkish Association of Travel Agencies

EMBARGO 21 JULY9.00 a.m.CET 22 July: World Brain Day 2015 devoted to epilepsy “Epilepsy is more than seizures” – Global awareness-raising for the underestimated burden of epilepsy – 75-80 percent of people with epilepsy in low income countries do not have access to medication “Epilepsy is more than seizures” is the motto of this year’s World Brain Day. This awareness campaign initiated by the World Federation of Neurology (WFN) and staged all over the world every year on 22 July is dedicated to bringing more attention to the importance of brain health and the prevention of brain diseases. This year, the WFN’s awareness efforts are supported also by the International Bureau for Epilepsy, the International League Against Epilepsy and the World Health Organization. More than 50 million people worldwide live with epilepsy, but diagnostic and therapeutic resources are unequally distributed globally.   London, July 2015 – “Epilepsy is one of the most common chronic neurological diseases. It is estimated to affect more than 50 million people around the world, and about 2.4 million people are newly diagnosed every year”, according to Dr Raad Shakir, President of the World Federation of Neurology (WFN). “However, there is a lack of awareness in the [...]

IBE is pleased to announce that Ann Little, IBE Executive Director, has been elected as President of the European Federation of Neurological Associations for the two-year term 2015-2017. The election took place at the General Assembly of EFNA, held during the 1st Congress of the European Academy of Neurology (EAN) in Berlin. EFNA is a network of neurological patient advocacy groups, focused on the field of neurology whose mission is to influence policy makers and legislators, particularly in European Member countries but also across the continent of Europe. Ann Little, IBE Executive Director, newly elected President of EFNA In line with IBE’s own mission, EFNA aims to encourage the implementation of the necessary resource priorities in order to reduce stigma and improve the quality of lives of people with a neurological disorder. Whilst remaining independent, EFNA also co-operates with the EAN and other agencies working in the field. Members of EFNA include European Multiple Sclerosis Platform, European Headache Alliance, Motor Neurone Disease Association, and Stroke Alliance Europe, as well as associations representing rare neurological disorders including International Huntington Association, Dystonia Europe, euro-ATAXIA and European Alliance for Restless Legs Syndrome.

IBE is pleased to learn that the EU Citizens Initiative – Stop Vivisection, which was submitted to the European Commission (EC) in early March, with an aim to repeal the existing European Directive (2010/63/EU) on the protection of animals used for scientific purpose, and presenting “a new proposal that does away with animal experimentation”, has not been successful. In recent weeks, IBE and the International League Against Epilepsy had been actively involved in bringing to the notice of policy makers in Brussels the implications that would arise should animal vivisection for medical research be halted. Last week, on Wednesday 27th May, the Commission announced its response to the Stop Vivisection initiative in which it states that the Commissions ‘does not intend to submit a proposal to repeal Directive 2010/63/EU and is not intending to propose the adoption of a new legislative framework’. The response also states that the EC recognises the need for further advancement of scientific before alternatives can be developed for all areas where testing still occurs and adds that: “The EU Commission will continue to promote the development and implementation of alternative approaches, encourage cooperation and knowledge sharing across sectors, validate new methods and facilitate their regulatory approval.” [...]