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Towards a Global Alliance on Epilepsy Research

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Towards a Global Alliance on Epilepsy Research International Epilepsy Day TOWARDS A GLOBAL ALLIANCE ON EPILEPSY RESEARCH International Epilepsy Day event in the European Parliament reports on the unmet needs in the field of epilepsy and the status of epilepsy research priorities at a global level. The event was organised by Epilepsy Alliance Europe joint task force of IBE and ILAE in Europe - and hosted by the European Advocates for Epilepsy MEP group in the parliament. 8 INTERNATIONAL EPILEPSY NEWS Two years ago, in February 2017, Epilepsy the European Federation of Neurological 2018. The first of these was the epiXchange Alliance Europe organised a very significant Associations, and a number of other stake- workshop, with seven large EU-funded proj- meeting in the European Parliament in Brus- holders, including the pharma industry. ects joining forces to organise the one-day sels to highlight the need for a global effort event on 23 May, in Brussels. The event was if appropriate advances were to be made designed to gather a critical mass of epilepsy in addressing the unmet needs of epilepsy, “I wish my researchers in order to showcase the latest both in Europe and around the world. progress in research aimed to improve the The meeting heard that, although very daughter way epilepsy is diagnosed and treated. The little progress had been made in improving projects had been funded mainly through medical outcomes of people with epilepsy simply to be the 7th Framework Programme (FP7). during the last decades, a large amount Participants heard how, despite intensive of data derived from extensive pre-clinical happy” and ongoing research, epilepsy research research has become available which pro- still faces several unmet needs, with major vided a strong rationale for the conduction This very successful meeting led to a follow gaps in understanding the disease with of potentially ground-breaking academi- up event in January 2018, when a Breakfast large economic and societal costs. The cally-driven clinical studies tackling several Briefing was organised and, again, host- event provided the opportunity to syner- priority issues that were acknowledged by ed by Brian Hayes MEP. The 2018 event gise the results of the seven diverse proj- the epilepsy community: was attended by several MEPs, including ects and to identify the several bottle necks • prevention of epilepsy; Mrs Lieve Wierlinck (Belgium), Seán Kelly which still remain. (Ireland), Alojz Peterle (Slovenia), Roberta • prevention of sudden unexpected Delegates included basic and clinical epilep- death in epilepsy (SUDEP); Metsola (Malta), José Inácio Faria (Portu- sy researchers, big and small pharma, and gal), and Franc Bogovič (Slovenia). Also patient organisations. Other participants • optimization of epilepsy surgery; present were Stéphane Hogan, Head of included Dr Karim Berkouk, Dr Stefan Ho- • worldwide development of mobile Sector for Neurosciences, DG Research & gan and Ms Anna Graca from the European health programs to disseminate essen- Innovation, European Commission; Anna Commission’s Directorate-General Research tial knowledge about epilepsy; Graca, DG Research & Innovation with & Innovation and representatives of the • assembling of a very large well charac- responsibility for epilepsy; and Fredrick European Brain Council. terized cohort of persons with epilepsy Destrebecq, Executive Director, European The meeting showed how a bottom up that could be participate in all the Brain Council. There to tell the epilepsy approach is needed to coordinate research above projects and in the development story on behalf of Epilepsy Alliance Europe and policies with more collaborative re- of personalized therapies for seizures, were Helen Cross, Martin Brodie, Lieven search, including public partnerships, public syndromes and related comorbidities. Lagae, Philippe Ryvlin, Eugen Trinka, Kristl private partnerships, and global co-operation. Vonck, Janet Mifsud, Caroline Morton and All of these objectives would require On the following day, the EU Research recruitment and financial capacities that Francesca Sofia. Commission held a workshop titled ‘Shap- could only be achieved at the global level, Two other significant events took place in ing the Future of Epilepsy Research’ with a and justify the building of a global alliance program for epilepsy research. The closed invitation-only event was hosted by Brian Hayes, President of the 67-member-strong group of Members of the European Parliament (MEPs) who form the European Advocates for Epilepsy group in the parliament, a number of whom attended the event. Also present were some of the most senior representatives of a number of agencies and associations from Europe and North America. These included the Head of Sector for Neuroscience at DG Research, the Head of the ERN program at DG Santé, the NIH Program Director of Epi- lepsy, the Scientific Director of the Institute of Neurosciences of the Canadian Institute for Health Research, the Presidents of IBE and ILAE, the President of the American Delegation to the parliament, from left: Jacob Krisetnsen representing ESBACE; Janet Mifsud, Epilepsy Society, the President and CEO Member EAE; Ann Little, IBE Executive Director; Philippe Ryvlin, Co-chair EAE; Martin Brodie, of Epilepsy Foundation of America, the IBE President and Co-chair EAE; Francesca Sofia, Member EAE; Astrid Nehlig, Editor Epilepsia; Chair of the Epilepsy Panel of the European Fred Destrebecq, EBC; Eugen Trinka, Chair ILAE-Europe and Member EAE; Michele Simonato, Academy of Neurology, the President of representing epiXchange. INTERNATIONAL EPILEPSY NEWS 9 global panel of speakers from Europe, Asia, 459 MEPs and had resulted in major fund- Members of the Africa, and North and South America, at ing for epilepsy research in the Framework European Advocates which it was reported that the upcoming Programme 7 (FP7). Many of the projects for Epilepsy Group EU Horizon Europe framework for research funded by FP7 now formed the epiXchange would be calling for bold inspirational network. Other epilepsy projects that had President: Brian Hayes (Ireland) approaches with wide societal relevance, received EU funding since 2011 included including open science, global challenges E-PILEPSY, the pilot European Reference Vice President: Nathalie Griesbeck and open innovation pillars. Also looking to Network (ERN) project; EpiCARE, an ERN (France) develop a global perspective, a call under focussed on rare and complex epilepsies; Members Heinz Becker (Austria), the H2020 project titled ‘Coordinating and ESBACE, a project funded by DG Sante Bendt Bendtsen (Denmark), Franc European brain research and developing that surveyed epilepsy prevalence and BogoviČ (Slovenia), Michal Boní global initiatives’ was underway with the cost burden in a number of countries. Prof (Poland), David Borelli (Italy), Paul European Brain Council’s European Brain Ryvlin highlighted the need for a global Brannen (UK), Christian-Silviu Bușoi Research Area (EBRA) proposal being focus on epilepsy research if progress is (Romania), Matt Carthy (Ireland), selected to coordinate the project. to be made in identifying new and novel David Casa (Malta), Nessa Childers So, it was with this, not-insignificant, treatments for the 30 – 35% of people with (Ireland), Lefteris Christoforou (Cyprus), background of activities, raising the call epilepsy whose seizures currently are not Kostas Chrysogonos (Greece), Deirdre for the global perspectives that are now controlled by existing treatments. There Clune (Ireland), Miriam Dalli (Malta), required in research, that a lunch meeting were new opportunities for such global Tanja Fajon (Slovenia), José Inácio took place in the parliament in Strasbourg research initiatives through the European Faria (Portugal), Eleonora Forenza on Tuesday 12 February 2019, the day after Brain Research Area (EBRA). (Italy), Lampros Fountoulis (Greece), International Epilepsy Day. An issue for concern was the lack of sup- Jens Gieseke (Germany), Theresa Invitations to the meeting were extended port in Europe for the WHA Resolution on Griffin (UK), Jytte Guteland (Sweden), to the 67 MEPs who form the membership Epilepsy, approved by the World Health András Gyürk (Hungary), Marian of the European Advocates for Epilepsy Assembly in 2015, with report back in 2018. Harkin (Ireland), Anna Hedh (Sweden), group and the event was hosted, once Few countries had addressed the recom- Liisa Jaakonsaari (Finland), Anneli again, by Brian Hayes MEP. At the lunch, mendations of the resolution and efforts Jäätteenmäki (Finland), Barbara 12 MEPs, from Czech Republic, France, were now underway for a call to action. Kappel (Austria), Karin Kadenbach Germany, Ireland, Finland, Luxembourg, While support had been received from (Austria), Seán Kelly (Ireland), Romania and Slovenia, voiced their support some countries including Russia, China and Katerina Konečná, (Czech Republic) for the 6 million people living with epilepsy Brazil, there had been no support from EU Miapetra Kumpula-Natri (Finland), in Europe. In turn, the MEPs heard from Member States, despite their support for Merja Kyllönen (Finland), Giovanni speakers about the continued unmet the EU Written Declaration in 2011. The ar- La Via (Italy), Jean Lambert (UK), needs of people living with epilepsy and gument was that epilepsy was too narrow Marian-Jean Marinescu (Romania), the need for improved services, novel a topic. However, the counter arguments Costas Mavrides (Cyprus), Mairead new treatments and actions designed to were that epilepsy encompassed several
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