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Ilaeannual-Report2016.Pdf OUR VISION International League Against Epilepsy’s vision is a world in which no person’s life is limited by epilepsy. OUR MISSION International League Against Epilepsy’s mission is to ensure that health professionals, patients and their care providers, governments, and the public worldwide have the educational and research resources that are essential in understanding, diagnosing and treating persons with epilepsy. INTERNATIONAL LEAGUE AGAINST EPILEPSY TABLE OF CONTENTS GOVERNANCE Executive Committee 2 President 3 Treasurer 8 Secretary-General 11 Vice-President 14 Elections Commission 15 Epilepsia 16 Epileptic Disorders 17 Epilepsia Open 21 Director of Interactive Media 24 Headquarters and Chapter Services Staff 26 International Director of Meetings 27 TASK FORCES Epilepsy Education 30 Global Outreach 34 Publications 38 Global Research Priorities and Advocacy 39 Stigma 41 REGIONAL COMMISSIONS African Affairs 43 Asian and Oceanian Affairs 44 Eastern Mediterannean 53 European Affairs 54 Latin American Affairs 57 North American Affairs 59 TOPIC-ORIENTED COMMISSIONS Classification and Terminology 64 Diagnostic Methods 68 Education 74 Epidemiology 79 Genetics 81 Medical Therapies 84 Neurobiology 85 Neuropsychiatry 92 Pediatrics 103 Surgical Therapies 107 NATIONAL CHAPTERS 111 CONSTITUTION 158 BYLAWS 161 Headquarters Office Chapter Services Office 342 North Main Street, Suite 301 7 Priory Hall West Hartford, Connecticut, USA Stillorgan 06117-2507 Co. Dublin Tel +1 860.586.7547 Ireland Fax +1 860.586.7550 Tel +353.1.278.4908 Website: www.ilae.org Fax +353.1.205.6156 2016 ANNUAL REPORT 1 EXECUTIVE COMMITTEE 2013-2017 PRESIDENT IBE, PRESIDENT (EX-OFFICIO) Emilio Perucca Thanos Covanis Italy Greece SECRETARY-GENERAL IBE, SECRETARY-GENERAL (EX-OFFICIO) Helen Cross Sari Tervonen United Kingdom Finland TREASURER IBE, TREASURER (EX-OFFICIO) Samuel Wiebe Robert Cole Canada Australia VICE PRESIDENT INVITEES: Tatsuya Tanaka EPILEPTIC DISORDERS Japan EDITOR-IN-CHIEF PAST PRESIDENT Alexis Arzimanoglou Solomon Moshé France USA EPILEPSIA OPEN COMMISSION ON AFRICAN AFFAIRS CO-EDITORS-IN-CHIEF A. Gallo Diop Gary Mathern Senegal USA COMMISSION ON ASIAN AND Aristea Galanopoulou OCEANIC AFFAIRS USA Byung-In Lee Dieter Schmidt Korea Germany COMMISSION ON EASTERN Xuefeng Wang MEDITERRANEAN AFFAIRS China Hassan Hosny Egypt INFORMATION OFFICER Edward Bertram COMMISSION ON EUROPEAN AFFAIRS USA Meir Bialer Israel EDUCATION COMMISSION Jaime Carrizosa COMMISSION ON LATIN Colombia AMERICAN AFFAIRS Marco Medina DIRECTOR OF INTERACTIVE MEDIA Honduras Jean Gotman Canada COMMISSION ON NORTH AMERICAN AFFAIRS STRATEGIC PLANNING Sheryl Haut Torbjörn Tomson USA Sweden EPILEPSIA, CO-EDITORS-IN-CHIEF Gary Mathern USA Astrid Nehlig France Michael Sperling USA 2016 ANNUAL REPORT 2 PRESIDENT’S REPORT Emilio Perucca As my term as President of ILAE comes to a close, it is followed in March 2017 by the final position papers appropriate to take a pause and reflect on what has on the classification of epileptic seizures3 and the been achieved over the last four years, and to highlight classification of the epilepsies.4 These position papers, the priorities that should guide our activities in the which are available via open access in the Epilepsia future. The League is a privileged organization that website (http://onlinelibrary.wiley.com/doi/10.1111/ can count not only on the dedication of its officers and epi.13709/epdf; http://onlinelibrary.wiley.com/doi/ personnel, but also on the contribution of hundreds 10.1111/epi.13670/epdf) represent the culmination of members of Commissions and Task Forces, and of a massive effort that has been ongoing within thousands of professionals who participate in the our community for over a decade, and provides a activities of our 114 national Chapters. None of the modern ILAE framework for terminology, definition achievements described below could have materialized and classification of epilepsy and seizure types. To without the commitment and perseverance of these assist the user in the application of these concepts, the individuals. ILAE Commission on Classification and Terminology has also prepared an instruction manual that includes The activities of the League during the 2013-17 term a valuable glossary and examples based on seizure were guided by the goals set out by the Strategic Plan descriptions from everyday clinical practice5 (http:// implemented in 2009 (http://www.ilae.org/Visitors/ onlinelibrary.wiley.com/doi/10.1111/epi.13671/epdf). Documents/StrategicPlan-FinalJuly-09.pdf), and can be described by reference to the key priority areas A related initiative aimed at improving diagnosis of identified by the Plan. seizure types and epilepsy syndromes is the cutting- edge online diagnostic manual of the epilepsies, Serving as the premier international epilepsydiagnosis.org (www.epilepsydiagnosis.org). The manual was conceived and developed by the resource for epilepsy knowledge Diagnostic Manual Task Force of the previous ILAE Commission on Classification and Terminology (2009- Since the League’s inception, ILAE Commission and 2013), in partnership with eResearch at the University Task Force Reports have been a valuable resource of Melbourne. It was launched formally in September to epilepsy professionals, assisting them in improving 2014 and is being constantly updated thanks to the diagnosis and management based on the best wonderful dedication of Kate Riney and her team. available evidence. During the 2013-17 term, a total Epilepsydiagnosis.org harnesses the power of the of 33 ILAE Commission and Task Force Reports have internet to present the complexity of the large amount been published in our journals and received with great of new information now available about the epilepsies interest, as testified by the high number of citations and and their etiologies in a manner that is concise, downloads. The list of these publications, which cover current, and accessible to a global audience. It is as a wide range of topics, can be found in the Secretary relevant to those in primary and secondary health General’s report. care settings as it is to those in tertiary epileptology practices. As an indication of the success of this In 2013, the Executive Committee adopted a new initiative, in the last quarter of 2016, the manual had procedure for the approval of papers that represent an average of 10,200 users per month engaging in the ‘official’ position of the ILAE, i.e. documents that 12,800 visits to the website, for an average of 7.5 are intended to provide a common language or set minutes per visit, with 44,000 page visits each month. of definitions for the international epilepsy community (e.g. defining epilepsy, defining specific syndromes, The exponential increase in the amount of information classification) (http://www.ilae.org/Visitors/Documents/ becoming constantly available is a challenging Guideline-PublPolicy-2013Aug.pdf). These papers are experience for physicians who strive to remain updated initially reviewed by the Executive Committee for overall on the latest developments, and to base their clinical approval of concept and content, and then submitted decisions on the best available evidence. Well- to Epilepsia for peer review and placed simultaneously structured clinical guidelines provide an important tool on the web for public comment for a period of two in condensing large amount of information, assessing months. All comments received are then addressed and the quality of the evidence based on transparent incorporated as appropriate by an ad hoc Task Force, criteria, and applying it to practical recommendations prior to final approval by the Executive Committee for rational diagnosis and management. Although as the ILAE position. This procedure ensure that the in the past the League has been involved in the League’s position papers reflect not only knowledge of production of guidelines, it was only in the present term a selected group of experts, but also the input of our 1 that the ILAE Task Force on Guidelines, led by Nathalie entire constituency worldwide. Jetté, developed rigorous rules and procedures to be followed when preparing ILAE guidelines in the The first position paper approved through this future.6 In parallel, the Task Force on Guidelines also process was the practical (operational) clinical conducted a systematic search of currently existing definition of epilepsy, published in 2014.2 This was clinical guidelines7 identifying major gaps which, 2016 ANNUAL REPORT 3 PRESIDENT’S REPORT (continued) hopefully, our organization will be able to address in The last four years also witnessed new exciting the near future. developments in the League’s publication portfolio, and I am grateful to the editors of our journals for making During the current term, the ILAE has increasingly such developments possible. Epilepsia continues potentiated its educational activities through a to be the most prestigious epilepsy journal for greatly improved website, a consolidation of VIREPA publication of original research articles and scholarly (distant education) courses, and an expanded range reviews, and its impact factor has steadily risen from of educational courses and training fellowships, 3.91 in 2012 to 4.70 in 2017. In 2013, the ILAE run mostly through our Regional Commissions and acquired Epileptic Disorders as its journal dedicated related educational academies. After two successful primarily to education. Finally, in September 2017, International Epilepsy Congresses (IECs) in Montreal the League launched
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