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14582 IBE Newsletter 2003 International Bureau for Epilepsy Annual Report 2003 Setting the Standard From Our Vision IBE has a vision of the world where everywhere ignorance and fear about epilepsy are replaced by understanding and care. Our Mission IBE exists to improve the social condition and quality of life of people with epilepsy and those who care for them. Our Goals • ORGANISATION To provide an international umbrella organisation for national epilepsy organisations whose primary purpose is to improve the social condition and quality of life of people with epilepsy and those who care for them. • SUPPORT To provide a strong global network to support the development of new Chapters, to support existing Chapters to develop to their fullest potential and to encourage co-operation and contact between Chapters. • COMMUNICATION To promote the facts about epilepsy and to communicate IBE’s vision, mission and messages to the widest possible audience. • EDUCATION To increase understanding and knowledge of epilepsy. • REPRESENTATION To provide an international and global platform for the representation of epilepsy. 2 International Bureau for Epilepsy Foreward During my fifteen years working, first in the British Parliament and Government and now in the European Parliament, I have seen and welcomed an ever-increasing awareness of the importance and benefits of strong partnerships. Networks and alliances are more than just “buzz words” – they are proven methods of achieving desired goals. They may not be easy to achieve, but, once in place, they make it simpler for patients, carers, professionals and academics to explain health needs and options for action and they make it easier for policy-makers to listen and to understand what is needed. The International Bureau for Epilepsy is already building admirable networks; with its international membership it can effectively advocate the need to put epilepsy higher on the agendas of governments and international health agencies around the world. In Europe I was privileged to participate in the Heidelberg Declaration on Epilepsy and then to facilitate and witness the launch in the European Parliament of the European White Paper on Epilepsy and the activities that this initiative has since instigated. One of these has been our Advocate Group of MEPs in the European Parliament, supported by EUCARE. I am delighted that EUCARE is now moving into its second phase. I very much welcome its plans for public education and research activities. On a wider scale, I believe that the Global Campaign Against Epilepsy, a partnership with the International League Against Epilepsy and the WHO, is having a significant impact on government thinking on every continent. Ensuring that national governments worldwide remain aware of the need to improve services for people with epilepsy is not always easy to achieve, as I know from my own experience. We must, however, remain encouraged and determined, never losing faith in the power that ordinary individuals can create, when they come together to work for a common cause. I am convinced that our ever-strengthening partnership of doctors, nurses, researchers, families, people living with epilepsy, managers and politicians in national and international parliaments – all working together – can and will succeed in improving the quality of life for people with epilepsy. Together we shall make a difference. John Bowis MEP Member of the European Parliament Annual Report 2003 3 President’s Message Dear Friends I would like to use this opportunity to thank the Chairs of our other Commissions also – John During 2003 IBE has Chaplin, Employment; Susanne Lund, Public continued to develop, Education; JoAnne Dahl, Psychological Approaches progress and move forward, to Epilepsy; Gus Baker, Research; and Ann Jacoby, and its future is now looking Risks and Insurability - for their efforts over the brighter than ever.Ten years past twelve months. ago, in 1993, our annual report indicated membership Together with ILAE, we have successfully of 39 Chapters and 16 negotiated with UCB Pharma to sponsor the Friends – by the end of 2003 EUCARE programme in Europe. EUCARE’s focus these figures have risen to 69 will be to establish a European-wide observational Chapters and 32 Friends; research study into the outcomes of treatment and almost doubling our presence quality of life issues and to develop activities in throughout the world. public policy campaigning and lobbying as part of the follow up to the European White Paper on IBE’s dynamism is evident in our new look Annual Epilepsy. Report. Its design and layout have been created to show not only our recent achievements and our confidence for the future, but, more importantly, how the plans of IBE directly reflect the aspirations and objectives of all of our members. The 25th International Epilepsy Congress in Lisbon was the highlight of the year’s events. No less than 38 Chapters were represented at the General Assembly Open Forum for discussions on IBE’s Constitution and its review. The task of reviewing IBE’s Constitution is ongoing, but we are confident that by early 2005 we will have a new Constitution bearing the stamp of approval of our members and valid to serve Pictured at a meeting with the WHO Assistant Director General Dr Catherine Le Gales-Camus (centre) from left, IBE’s future development. In addition, a Strategic Dr Benedetto Saraceno,WHO Director of the Dept of Mental Health Plan, which will carry IBE forward with the and Substance Abuse; Prof Giuliano Avanzini, ILAE President; mechanisms required to meet future challenges Mr Philip Lee; and Dr Leonid Prilipko, WHO Programme Leader of Neurology and Neuroscience. and opportunities, was approved during the Photo: Hanneke de Boer General Assembly. Since then work has begun on its implementation. We have continued to develop the ILAE/IBE/WHO Global Campaign Against Epilepsy as a model IBE continues to develop strong regional structures partnership between Non Governmental Organisations through its three Regional Committees in (NGOs) and the World Health Organisation (WHO). Asia-Oceania, Europe and Latin America. My thanks to the three Chairs of these Committees, Let me finish by expressing my thanks to all those respectively Marshal Mo-Song Hsi, Hilary who have helped and supported IBE. In particular, Mounfield and Carlos Acevedo. my thanks to all the Chapters and Friends of IBE. Your work in countries around the world is truly Dr Thanos Covanis, IBE Vice President, Chairs the inspiring. One of IBE’s major strengths lies in the Eastern Mediterranean Region Task Force, tremendous diversity of its membership; we hope which is working to attract new members from that that this report adequately reflects this. region.To encourage IBE enlargement in Africa we have a Commission for Africa, co-Chaired by Philip Lee Hanneke de Boer and Kathy Pahl during 2003. President 4 International Bureau for Epilepsy A Future for the International Bureau for Epilepsy In reviewing our Constitution, we are working to ensure that IBE is governed and led in an open, democratic and transparent way such that it commands the fullest confidence, participation and support of its Chapters, Friends and other stakeholders. Over the past decade IBE’s membership has increased almost twofold, and is set to continue increasing dramatically over the coming years. In addition, epilepsy and those affected by the condition are experiencing a process of dynamic change reflected by changes in global economic, medical, technological and political circumstances. In response to this, a Long Term Strategy, which identifies objectives and actions required by IBE in order to meet future demands on its resources and to ensure that the Bureau can satisfy the demands and expectations placed on it in the future, was Members of the Constitutional Task Force, Mike Hills, adopted by the General Assembly when it met Hilary Mounfield, Carlos Acevedo and Philip Lee, during the 25th International Epilepsy Congress in check the notes taken by Ann Little,Administration Manager, Lisbon in October 2003. during a meeting to review the first draft new Constitution. Photo by Marshal Mo-Song Hsih, the fifth member of the task force A component of this plan is a radical revision of IBE’s Constitution, which began with the October and feedback received influenced a first establishment of a Constitutional Review Task draft Constitution, reviewed by the Constitutional Force charged with overseeing the review process. Review Task Force early in April 2004. The members of the Task Force comprise the At the beginning of June 2004 a first exposure Chairs of the Regional Committees of Asia Draft Constitution was circulated, together with a Oceania, Europe and Latin America, IBE President Consultation Questionnaire.This phase of the and the IBE 1st Vice-President. review will end at the end of July after which a Since the General Assembly, work has progressed final draft will be produced by the Task Force for apace; discussion papers were circulated to all presentation to the Executive Committee and stakeholders for their views and suggestions in late thereafter to IBE members. By early 2005, a new Constitution, whose content will have been influenced by IBE’s members – those associations to which it ultimately relates – will be ready for voting on.We are excited by the prospect of a new Constitution that will take IBE confidently forward to meet demands placed on it in the coming years. Delegates at the 25th International Epilepsy Congress, Lisbon Annual Report 2003 5 Providing a Strong Global Network Throughout 2003 we worked to provide a strong global network to support the development of new Chapters, to support existing Chapters to develop to their fullest potential and to encourage co-operation and contact between Chapters. • The IBE Long Term Strategy 2003 – 2005 presents a way forward to ensure that IBE has a practical, relevant and meaningful future; its adoption by the General Assembly in Lisbon marked a first step in realising this long term plan.
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