International Bureau for 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. • To implement the Long Term Strategy, work began on the development of a range of Operational Action Plans, including work on a Communications Plan and an Education Plan. A review of IBE’s Administration has also begun.

• One of the major steps in providing appropriate Two young members of ANBER, Romania, support for members lies in creating a new enjoy the association’s Christmas celebrations Constitution.The Open Discussion Forum at • An Editor’s Network was created and had its the General Assembly in Lisbon provided the first meeting in Lisbon.The aims of this group opportunity for Chapters and other stakeholders are to provide a platform for editors of Chapter to express their views on significant elements of and Friend association newsletters to share the Constitution. editing and publishing experiences; to share • The Regional Committees in Asia Oceania, ideas on becoming more creative in spreading Europe and Latin America are uniquely the epilepsy message; and to see how members positioned to support members in their regions; might share materials for best use of available recognising issues specific to their region and resources. encouraging the development of new epilepsy • The Public Education Commission began organisations. During 2003 IBE welcomed new researching the concept of an image database Chapters and Friends in Venezuela and Jamaica IDEA (Image Database Epilepsy Awareness). (Latin America);Thailand, Hong Kong and Images would be stored as “thumbnails” on a Australia (Asia Oceania); Switzerland, UK, website managed by the Commission, with Cyprus and Romania (Europe). ownership and copyright remaining with the • A newly created Eastern Mediterranean creator of the image. Task Force held a successful launch at the • The Asian Oceania Regional Committee Lisbon congress.There are very positive signs initiated plans for a regional Outstanding Person that IBE’s presence in the region will increase with Epilepsy Award. significantly in the near future with prospective new members in Morocco, Lebanon and Egypt. • A Reproduction Licence was devised during the year by the IE News Editor. Renewable • The Commission on Africa has been very annually, the licence will allow unlimited active in 2003; marked by the approval at the reproduction of extracts from the IE News, General Assembly of five new chapters in Africa subject to certain criteria being met. - Tanzania, Zambia, Uganda, Algeria and Niger. The commission held well-attended sessions in • The Latin American Regional Committee Lisbon and has significant plans for future facilitated the celebration of the annual Latin activities. American Epilepsy Day on 9th September.

6 International Bureau for Epilepsy Throughout the world, Chapters and Friends worked tirelessly to support people with epilepsy in 2003 through a wide range of activities:

• Epilepsy Canada introduced a Community Grant Program to help epilepsy associations in Canada to develop new and innovative programs for people with epilepsy. • Due to major cutbacks by health departments in Romania, the provision of AEDs to people with epilepsy was disrupted; ANBER, the IBE Romanian chapter, took positive action and was successful. Scottish Hibernian football club player,Alen Orman launching • Our Chapter in Guatemala was invited by the Epilepsy Scotland's freephone Helpline President of the Supreme Court in El Salvador • In the Netherlands, SEIN, continued work to help implement epilepsy programs in that on a state-of-the-art residential complex at country. Heemstede; when completed it will offer • AISPACE in France began collaboration with accommodation to 90 people with epilepsy. autism associations to support those with autism • Singapore continued who also have epilepsy. to pursue its plans for a Centre to provide job • POCET, our chapter in Tanzania operated a opportunities for people with epilepsy. drugs bank, to provide low cost AEDs to • At Epilepsy Hospital Bethel in Japan, 270 members. people with epilepsy were assessed on an • Registered nurses, psychologists, educators and in-patient basis, amid concern at a recent communications professionals working with governmental change in the Japanese medical Epilepsy Association in Australia helped system that pressurises an increase in the speed 25,000 people with epilepsy during 2003. with which cases are dealt. • Spolecnost “E” – Czech Epilepsy Association- • The Serbian-Montenegrin Society for opened the first short-term hospital/epilepsy Epilepsy (formerly the Yugoslav Society for centre in the Czech Republic. Epilepsy) established a non-profit, non- governmental organisation called “Episport” •EYALin Israel provided subsidized tutoring for whose goal is to promote optimal quality of life schoolchildren with epilepsy to help them for young people with epilepsy, through a range achieve well at school and improve self-confidence. of social activities. •Dianalund Epilepsy Centre, a Friend association in Denmark reopened a newly renovated ward for children with epilepsy. •Kenya Association for the Welfare of Epileptics (KAWE) held 208 clinics and made 17,692 patient visits.The association aims to create a sustainable and integrated epilepsy care programme that is both accessible and affordable. • The National Centre for Young People with Epilepsy (NCYPE) UK, raised funds required to endow Europe's first Chair in New residential accommodation at SEIN, Netherlands Childhood Epilepsy.

Annual Report 2003 7 Communicating our Message

IBE works to promote the facts about epilepsy and to communicate its vision, mission and messages to the widest possible international audience.

• Our newsletter, International Epilepsy News, is distributed four times a year in 112 countries. During 2003 significant changes were made to format and content and by mid-2004 it is expected to publish in full colour. • Our website is now used by many Chapters as their primary reference point for information from and about IBE. Emerging as an efficient and effective support facility for IBE’s administration, the creation of a Website Advisory Group will steer the site to even greater things in the coming years. • Radical changes to our Annual Report have resulted in a publication that reflects a progressive organisation. Our report for 2003 also shows how the aims and activities of IBE are mirrored in many of the projects undertaken by our Chapters and Friends. • During 2003 we carried out a major review of all our publications.We are now working to Irish politician Gay Mitchell, pictured here with Mother Theresa, enable free downloading of almost everything spoke in the IE News about his wife’s epilepsy. He has since been elected a Member of the European Parliament (MEP) we publish from the IBE website. • The Latin American Regional Committee submitted for publication.This commission also has published the first Spanish language book on made a well-received presentation to the epilepsy for doctors.There are now plans to Australian Branch of the Life Underwriters and translate the book into Portuguese. Claims Association. • Every IBE activity involves communication; • The Employment Commission, through its publications and newsletters, reports and EYiE initiative, continues to maintain a weekly promotional materials, General Assemblies, EYiE Chat Room. Congress Stand promotions, representation on • The Asia Oceania Regional Committee is other NGOs, and of course our website. A producing a book on epilepsy for patients. Communications Plan, commenced in 2003, • The highlight for the year was undoubtedly the will report on how best to facilitate the successful 25th International Epilepsy exchange of information, knowledge and Congress, Lisbon. Large international experience about epilepsy between members meetings such as these provide an excellent and to ensure that IBE communicates effectively opportunity to advertise the work of IBE.This with all its identified audiences. we achieved through Commission Sessions, the • The results of a survey carried out by the IBE Stand, posters advertising our Commission on Risks & Insurability on Commissions, Chapter Workshops, General insurance problems encountered by people with Assembly, Open Business Meetings, Epilepsy epilepsy in the UK was completed.The findings Awareness Poster Competitions, as well as are now being written up and will shortly be through media reporting during the congress.

8 International Bureau for Epilepsy Epilepsy still attracts stigma in every region of the world. IBE members continue to work for its reduction through the provision of appropriate information using all possible available media.

celebrated the first National Epilepsy Day during 2003. • Epilepsy Support and Information Centre (ESIC) in Saudi Arabia, continues to maintain a comprehensive Arabic language website: www.epilepsyinarabic.com • Epilepsy Association of South Australia and Northern Territory Inc. established bus, television and radio community services promotions to get its message across.

Members of Taiwan Epilepsy Association • In Cuba, the IBE Chapter also used radio to enjoying a day out amid beautiful scenery spread its message. Radio Rebelde aired a programme on Epilepsy and Education. • Epilepsialiitto in Finland dedicated 2003 as the Year for Children with Epilepsy and their • The Danish Epilepsy Association intensified Families. A range of new publications including efforts to provide information through Epilepsy ABC (a book for teachers) and Epilepsy meetings, a new website and a new publication. and Children were published to mark the • Still in its infancy, the Hong Kong Epilepsy occasion. Association encourages its members to • The Iranian Epilepsy Association provided produce an in-house magazine, helping to raise 35,000 copies of books, brochures and posters self-esteem while at the same time informing to the public.The association also created a the public about epilepsy. library of 300 volumes for members. • Epilepsy Foundation’s Epilepsy Month • Deutsche Epilepsievereinigung e.V., campaign theme, Entitled to Respect, supported Germany produced a new newsletter by radio messages targeted to African American “Denkzettel” providing information on health teens and a Get the Word Out! contest on the and social issues as well as events and opinions meaning of respect, generated 164 million on epilepsy. media impressions. • The Jamaican Epilepsy Association hosted the 2nd Caribbean Congress on Epilepsy in Kingston in November. • Mr Sven-Göran Eriksson, Manager of the English Football Team, became a member of the Swedish Epilepsy Association and provided an interview for its magazine. •Taiwan Epilepsy Association produced a 20-minute video “Meeting People” with Chinese and English actors. • The newly formed epi-suisse in Switzerland launched numberous information campaigns targetting the general public. Switzerland also Epilepsy Foundation Entitled to Respect poster

Annual Report 2003 9 Increasing understanding and knowledge

Education forms a key element of our Long Term Strategy. Through a range of educational opportunities we can increase knowledge of epilepsy to both internal and external audiences. Through knowledge comes understanding.

• In response to positive feedback from Chapter • The European Regional and Friend associations, initial work on IBE’s Committee was involved in the Training Service Programme began, the production of the EUCARE first modules of which were a range of Chapter Action Pack, in response to the Workshops held during the Lisbon Congress. European White on Epilepsy.The Since then, terms of reference for a Training pack aims to equip Chapters and Services Advisory Group have been drafted others with the skills to influence and were approved by the Executive the future of epilepsy policy and Committee.The advisory group will provide the services throughout Europe. Bureau with an experienced team of people who • As part of the Long Term Strategy will advise on various issues relating to its Plan, an Education Plan was training services. initiated.This will identify how Children participate in • In addition to the initiatives underway by the best to integrate educational Epilepsy Support & Inform ILAE/IBE/WHO Global Campaign opportunities, research initiatives, annual “Family Festival f Against Epilepsy, many individual chapters published materials and database around the world also used the campaign resources into a comprehensive and platform to launch educational initiatives wide-ranging Education Programme. relevant to their region and targeted audiences. • One of the most popular initiatives of our Commissions, the Epilepsy Youth in Europe (EYiE) Project of the Employment Commission, continues to encourage social development of young people and to provide youth leader training. Originally a Europe-based project, it has now spread its wings to other regions. In September 2003, 35 young people from 10 Chapters were involved in a youth exchange project in Malta.The next exchange will take place in Chile in 2004. • The Psychological Approaches to Epilepsy Commission presented demonstrations on psychological approaches to manage- ment in association with Epilepsy South Africa. • The Latin American Regional Committee was involved, as part of a WHO programme team, in the compilation of clinical guidelines for primary health doctors. • Plans for the development of educational programmes for specific target groups in Africa are being drafted by the African Commission. The cover of a publication produced by FLAME, Pakistan to mark their National Epilepsy Day

10 International Bureau for Epilepsy During 2003 Chapter and Friend Associations successfully provided a high level of training and education services on a range of epilepsy-related topics for people with epilepsy and their carers, medical professionals, and the general public.

• The Chilean League Against • For the past three years, the Centro Nacional Epilepsy, IBE’s chapter in Chile, de Epilepsia APNE, Ecuador, has been held training courses for developing a programme of continuing teachers and community workers. education in Neurology and Psychomotricity, aimed at improving conditions for school-going • Caritas Malta Epilepsy children. Association hosted the EYiE of Horus Project of the • Epilepsy Care Group (Singapore) set up Employment Commission.This “Opportunity!”, a one-stop charity shop event saw 35 young people providing hands-on retail training for from 10 countries meeting in unemployed people with epilepsy. Malta.The event was made • The IBE Chapter in Cuba provided courses possible by EU funding obtained n craft activities at the on the Internet and also ran workshops for by IBE’s Employment Commission. ation Centre, Saudi Arabia, families called “What everyone needs to know for Epilepsy Awareness” • Epilepsy Association of Zambia about epilepsy”. celebrated two successful events • Epilepsy Society of Australia (ILAE Chapter) in 2003 - the launch of the Global Campaign held its annual meeting in New Zealand, Zambia Programme and a Workshop on providing a rare opportunity for fieldworkers Management of Epilepsy at Primary Care level. from Epilepsy New Zealand to meet with those undertaking similar work in Australia. • POCET in Tanzania purchased a substantial plot of farmland. Plans are underway to develop training modules that will provide education in agriculture skills to adolescents with epilepsy.

The Biripi Group in northern New South Wales,Australia, with Shelley O’Keefe of Epilepsy Association • Epilepsy Connections, Scotland, moved to larger premises allowing the association to provide its existing training and fieldwork services more efficiently and to extend its activities to provide art & creative writing and memory workshops for adults and children. • Spolecnost “E”, Czech Republic held courses and lectures for people with epilepsy, teachers and the general public. Members of Liga Tungurahuense, Ecuador, enjoy a day’s outing

Annual Report 2003 11 Photo Gallery 2003

Clockwise from left: Ambassador Award winners Thanos Covanis (with his wife Lynn), Zenebe Damtie, Dragoslav Ercegovac, Mike Glynn, Susanne Lund, and Marshal Mo-Song Hsih; Dr Chi Wan Lai winner of the Social Accomplishment Award with his wife; Lisbon Congress banner; Caroline Morton at the IBE Stand in Lisbon; members of the EUCARE Management Group,Martin Brodie, Hanneke de Boer, Susanne Lund and Paul de Belder (UCB Phama).

12 International Bureau for Epilepsy London Epilepsy Art Group (LEAP)

Clockwise from below: Members of the Editors Network at their first meeting during the congress in Lisbon; delegates to the Eastern Mediterranean Conference on “Epilepsy as A Public Health Concern in the Eastern Mediterranean Region”, Cairo, March 2003; members of the Employment Commission EYiE Group in Malta, September 2003; Finnish Poster – winner of the Public Awareness Poster Competitions in Lisbon; as part of a Global Campaign Against Epilepsy project in China, doctors man information desks in a Beijing Square to improve public awareness.

Annual Report 2003 13 Advocacy and Awareness Raising

Lobbying and advocacy are now seen as standard tools in working to instigate change.

• Developing an expertise in making Public Awareness Poster Competition in representations to government departments and Lisbon provided inspiration to emerging health agencies is becoming a necessity as the chapters looking to increase awareness in their importance of advocacy grows. Modules own regions. included in the EUCARE Action Pack • The number of countries involved in Global demonstrating how some chapters in Europe Campaign Against Epilepsy Demonstration have structured effective advocacy and Projects rose to 13 during 2003, and more are awareness campaigns will provide examples that planned. For the second year, “epilepsy” can be emulated by other epilepsy associations. appeared on the agenda of the annual WHO Regional Advisors for Mental Health meeting in Geneva with members of the Global Campaign Secretariat invited to attend. • The Employers Forum initiative of the Employment Commission brings together employers and IBE chapters to develop equal opportunity policy statements for people with epilepsy.The Commission is also in contact with the International Labour Organisation which, with the UN and the World Bank, has a Youth Employment Network aimed at promoting Katrien Bogaert, Belgian chapter, interviewed by youth and employment policies in Africa, South National TV at their conference held on the Epilepsy day America and Asia. • At Parliament Level, the EUCARE Advocates for Epilepsy group, grew in strength in 2003. Led by John Bowis, MEP,who provided the Foreword for this report, it is expected that more Members of the European Parliament will join the group following European Union elections in 2004. • Through membership of the European Federation of Neurological Associations (EFNA), IBE is forging strong links with other groups that have as their focus a range of neurological disorders. Such alliances lend strength and credence when making representation to appropriate European bodies. • The Commission on Risks and Insurability continues to focus on the insurance industry in its objective of improving insurance provision for people with epilepsy. • Since pictures “paint a thousand words” one of the most effective ways of transmitting a An entry from Taiwan Epilepsy Association for message is with a powerful image. IBE’s Chapter the Public Awareness Poster Competition in Lisbon

14 International Bureau for Epilepsy London Epilepsy Art Group (LEAP)

Successful advocacy and awareness raising campaigns, targeting appropriate local audiences, were undertaken globally by members.

• The Norwegian •Gravesend Epilepsy Network, UK, was Epilepsy Association involved in setting up a South East Regional celebrated the introduction Neurological Alliance. of a government approved • Les Amis de la Ligue Belge contre l’Epilepsie national treatment plan /De Vrienden van de Belgische Nationale for people with epilepsy. Bond tegen Epilepsie produced a video that • Hong Kong Epilepsy was broadcast on TV to mark National Epilepsy Day. Association undertook • Epilepsy Association of Western Australia lobbying and advocacy (EAWA), a member of JECA, held their annual work with transport awareness and fundraising programme “World of companies and with the Trivia”, involving almost 5,900 students. Equal Opportunities Commission. • In Ecuador, the Liga Tunguahuense de Control de la Epilepsia continues to enjoy • During 2003, EDYS Little Poss, mascot of Epilepsy the patronage of the Archbishop of Cuenca, with Queensland,Australia with a fan Epilepsy Group, help towards the provision of AEDs to members. Mauritius, encouraged by Government policy, broadened its base to • HALE, Hungary, was represented on the National become nationally focussed. Council for Health and on the Social Council. Their EPIHOUSE project was also discussed on • Epilepsy South Africa organised national two occasions in the Hungarian Parliament. Epilepsy Advocacy Action training workshops in Johannesburg. • In Korea, the Korean Epilepsy Association held a public forum to discuss the laws affecting • Epilepsy Foundation, USA held a Living Well people with epilepsy.The meeting was chaired II Conference, bringing together experts in by the Disabled Policy Making Committee of treatment, epidemiology, self-management and the Ministry of Health and Welfare. quality of life, to make recommendations to the public health community. • A public awareness campaign at one of the major shopping complexes in Kuala Lumpur was • Epilepsy Scotland is assisting the government organised by Persatuan Epilepsi Malaysia. health body with new SIGN guidelines for Plans are being made for a national epilepsy children with epilepsy. Awareness week in 2004. • The President of Polskie Stowarzszenie •National Epilepsy Fund (NEF), Ludzi Cierpiacych na Padaczke, Poland, Netherlands, recruited a famous television was appointed to the National Consulting Board personality and a former international footballer for Disabled Persons and to the Provisional as ambassadors for the association. Disabled Persons Social Affairs Board. •AEAE, Spain, took part in the “Mutual Assistance • Epilepsy Support Association, Uganda, and Community Health” event in Madrid, with networked with other NGOs in other disability the opportunity to discuss experiences and ideas movements and participated in the formation of with other patient groups. the Disability Bill. • PERPEI, Indonesia made representations to • Bureau Francais de l’Epilepsie, France, government regarding availability of reasonably produced information leaflets to assist specialists priced AED’s, employment and salary equality in the area of disability employment to recognise for people with epilepsy. Support was also sought specific difficulties faced by people with epilepsy. to host the 2006 Asian Oceania Regional Congress.

Annual Report 2003 15 Research

2003 was a particularly successful year for IBE with regard to epilepsy research with several new projects planned or initiated.

• The Commission on Risks & Insurability • Preparations for Phase 2 of has continued work on amalgamating research EUCARE were ongoing during evidence related to risks after a first seizure, much of 2003.The new risks of relapse following a period of remission, programme, funded by UCB mortality risk and driving risk. Pharma, will include a major research project “An observational • Funding for a research prize has been obtained study of pharmacological out- from Novartis by the Research Commission.The comes and lifestyle consequences Novartis Research Prize will award research of newly diagnosed epilepsy in into the understanding of social and psychological different countries in Europe”. consequences of epilepsy and ameliorating its More that 100 centres will be impact.The prize will be presented during the recruited who diagnose, 26th International Epilepsy Congress, Paris 2005. investigate, manage and follow-up • The Commissions on Risks & Insurability and such patients.The aim of the Members of the Asociación de P Research, working with the Global Campaign programme will be to link patient Ecuador pose for an im and the WHO, have secured significant funding outcomes with a range of from the National Institutes of Health (USA) to educational, scientific and public develop research capacity into the stigma policy projects that will be designed of epilepsy.Work on this project has already and led by members of the EUCARE Scientific begun in Vietnam and China. Advisory Board. • The Commission on Psychological • The Global Campaign Against Epilepsy Approaches to Epilepsy continues work on has been researching national epilepsy resources two major projects to investigate the impact of by way of a questionnaire to IBE and ILAE psychological interventions for people with chapters.To date 130 completed questionnaires drug resistant epilepsy.The aim of the study is have been submitted and entered into a database. to evaluate the Acceptance and Commitment Collection of data is ongoing.The Global (ACT) approach and the use of Yoga versus Campaign has also been working with the WHO supportive therapy to improve quality of life and to develop evidence based guidelines on the reduce seizure frequency. Studies are ongoing in treatment of epilepsy in childhood and adolescence. South Africa and India. • The Employment Commission carried out a survey of sheltered work facilities and supported employment initiatives for people with epilepsy with help from the Latin American Regional Committee and the African Commission, the results of which were presented in Lisbon.The objective of the survey is to create a network of people around the world who are involved in providing sheltered and supported services.

Young members of AISPACE, France in happy mood

16 International Bureau for Epilepsy IBE Chapters and Friends are well aware that research, on social or medical aspects of epilepsy, helps to focus on and target specific difficulties faced by people with epilepsy and those who care for them.

• Associacao Brasileira de • The Serbian-Montenegrin Society for Epilepsia, Brazil, created Epilepsy has completed a five-year project commissions on Quality of Life, “Epilepsy—what we know and learn”. Neuropsychology, Publications and Communications to validate • Member organisations of JECA, our new recognised international scales for Australian chapter, will research the state of the impact of epilepsy in epilepsy services in Australia and negotiate with Portuguese. the Australian Government on issues relating to these services. • The Danish Epilepsy Association was involved in the establishment of a working party to prepare new National Clinical Padres de Niños con Epilepsia – mpressive group photo Guidelines for Epilepsy Treatment • The Portuguese League Against Epilepsy presented the findings of research on attitude and knowledge of epilepsy to the general public. • The Epilepsy Association of Sri Lanka set up a clinic to gather information on patients learning problems and employment difficulties. From left: Dr. Perla David, Miss Cecilia Campos, The clinic will also assess patients for Tomas Mesa, Professor Sean Alcardi, and Dr Jorge Föester neurosurgery and treatment. attending a chilean chapter symposium • The Swiss Epilepsy Centre continues to host • Epilepsie Euro Services, France, the EPI-Info Centre.The centre maintains a unique continued its research project “Epilepsy – collection of materials and information on epilepsy, its presence and perception in the workplace”. including the IBE video collection and materials First results were presented at the Epilepsy & donated by Chapter and Friend associations. Society conference in Malta in March 2004. • In Senegal, the Ligue Sénégalaise Contre l’Epilepsie held several meetings to address the Pikine Test, which is the prelude to the Global Campaign Against Epilepsy project. • TheTaiwan Epilepsy Association (TEA) website was voted one of the best medical sites by the Department of Health. • The National Society for Epilepsy (NSE) concluded a fundraising campaign for a 3T MRI scanner which, when operational in mid- Aleksandar Petanovic (2nd from right) of the Serbian-Montenegrin 2004, will underpin the NSE’s research Society for Epilepsy graduated as a karate instructor. programme. From left, his mother Radmila, mentor Prof Jovanovic and Dr Maria Popovic

Annual Report 2003 17 Financial Report

BALANCE SHEET Year ended 31st December 2003 With comparative totals for 2002

2003 2002 US$ US$

FIXED ASSETS Tangible assets 1,738 1,428

CURRENT ASSETS Debtors and prepayments 41,669 78,912 Cash at bank and in hand 643,996 292,909

685,665 371,821

CREDITORS (Amounts falling due within one year) (172,391) (225,516)

NET CURRENT ASSETS 513,274 146,305

CREDITORS (Amounts falling due after more than one year) Deferred Income (321,746) -

NET ASSETS 193,266 147,733

CAPITAL AND RESERVES General reserve 78,909 96,989 Restricted fund 114,357 50,744

193,266 147,733

These figures are extracted from the IBE accounts for the year ended 31st December 2003 audited by Deloitte & Touche

18 International Bureau for Epilepsy STATEMENT OF INCOME AND EXPENDITURE Year ended 31st December 2003 With comparative totals for 2002

2003 2002 US$ US$

INCOME International congresses and symposia 225,589 337,771 Commerce and industry 22,500 11,250 Membership dues 27,263 27,955 Society contributions 6,163 3,719 Investment income 359 810 Sale of materials 293 1,021 Other grants 107,249 66,560

389,416 449,086

EXPENDITURE Salary costs 78,756 62,678 Office expenses 9,132 7,765 Printing and postage 12,846 9,666 Printing and postage - International Epilepsy News 29,939 23,124 Travel 66.076 60,454 Global Campaign costs (169) 35,550 Accountancy services 15,000 15,000 Bank charges 833 849 Rent 5,885 4,529 Subscriptions 355 274 Depreciation 1,367 1,142 International Resource Centre costs - 10,122 International Director of Meetings costs 121,337 171,843 Website costs 4,056 16 Management fees 17,829 - Miscellaneous (19,356) (23,023)

343,886 379,989

Operating Surplus for year 45,530 69,097

Annual Report 2003 19 Contact Directory

Central Offices

Administration Office Global Campaign Against Congress Office Ann Little Epilepsy Congress Secretariat Administration Manager Hanneke de Boer, 12 Mountdown Road 253 Crumlin Road, Dublin 12, Co-Chair Global Campaign Against Walkinstown, Dublin 12, Ireland Ireland Epilepsy, T: +353 1 409 7796 T: +353 1 456 0298 PO Box 21 F: +353 1 4291 290 F: +353 1 455 4648 2100AA Heemstede E: [email protected] E: [email protected] The Netherlands T: +31 23 5588 412 Membership Website: F: +31 23 5588 419 All IBE membership enquiries should Caroline Morton, E: [email protected] be addressed to the Administration PO Box 21, 2100AA, Heemstede, Office The Netherlands EUCARE E: [email protected] Karen Lee-Donaldson EUCARE Programme Manager www.ibe-epilepsy.org PO Box 187, Leeds LS16 9WA, UK T: +44 113 203 7508 E: [email protected]

IBE has 106 member associations, working for people with epilepsy, in 77 countries around the world.

ALGERIA BRAZIL Chapter: Association d’Entraide aux Malades Epileptiques, 4, Chapter: Associação Brasileira de Epilepsia, Rua Botucatu 740, Bd Didouche, Mourad, SIG 29300, T: +213 4584 9775, Vila Clementino, São Paulo, São Paulo, CEP: 04023-900, F: +213 4584 0555, E: [email protected] T: +55 11 5549-3819, F: +55 11 5081-5005, E: [email protected] ARGENTINA Chapter: Asociacion de Lucha contra la Epilepsia,Tucuman 3261, BULGARIA 1189 Buenos Aires, T/F: +54 114 8620 440, Chapter: Association for Assistance of Patients with Epilepsy, E: [email protected] Mladost 1, Bl. 65, Ent. A, App 10, 1784 Sofia, T/F: +359 2740 946, E: [email protected] AUSTRALIA CANADA Chapter: Joint Epilepsy Council of Australia Ltd, 818 Burke Chapter: Epilepsy Canada, 1470 Peel Street, Suite 745, Road, Camberwell,Victoria 3124, T: +613 9805 9111, Montreal, Quebec H3A 1T1, T: +1 514 845 7855, F: +613 9882 7159, E: [email protected] F: +1 514 845 7866, E: [email protected] Friend: Epilepsy Association (ACT) Inc, 27 Mulley Street, Holder,ACT 2611, T: +61 026287 4555, F: +61 026287 4556, CHILE E: [email protected] Chapter: Liga Chilena contra la Epilepsia, Patriotas Uruguayos Friend: Epilepsy Association of South Australia & North Territory, 2236, Codigo Postal: 6501205, Santiago, T: +56 2699 2288, Epilepsy Centre SA & NT, 25 Kilkenny Road,Woodville SA5011, F: +56 2699 4084, E: [email protected] T: +61 088445 6131, F: +61 088445 6387, E: [email protected] COLOMBIA Friend: Epilepsy Association of Western Australia (Inc), Centre Chapter: Junta National Liga Colombiana contra la Epilepsia, for Neurological Support,The Niche, Suite B, 11 Aberdare Road, Cap de Bolivar, Barrio Ternera, Calle 1a., El Eden,Y 5007 Nedlands WA 6009,T: +61 89346 7699, F: +61 89436 7696, E: Cartagena, T: +57 56618 127, F: +57 56618 111, [email protected] E: [email protected] AUSTRIA CONGO Chapter: Epilepsie Dachveband Osterreich (EDO), Provisional Chapter: Association Fallone, Wichtelgasse 55/17-19, 1170 Wien,T/F: +43 1489 5278, 188 Av de l’Indépendance Tié Tié, BP 1533, Pointe Noire, E: [email protected] T: +242 53 7134, F: +242 242 958, E: [email protected] BELGIUM CROATIA Chapter: Les Amis de las Ligue Nationale Belge contre Chapter: University Hospital Center Rebro, Dept of Paediatrics, l'Epilepsie asbl,Avenue Albert 135, Brussels 1190,T: +32 2344 3263, Divsion of Neuropaediatrics, Kispaticeva 12, 1000 Zagreb, F: +32 2343 6837, E: [email protected] T: +385 1238 8528, F: +385 1242 1894

20 International Bureau for Epilepsy CUBA Friend: Interessenvereinigung fur Anfallskranke in Koln eV, Chapter: Capitulo Cubano de la IBE, Hospital Psiquiatrico de la Honinger Weg 361, D-50969 Koln, T: +49 22136 05767, Habana, Ave Independencia No 26520, Reparto Mazorra, F: 49 22147 34875, E: [email protected] Boyeras. Ciudad Habana, CP 19220, T: +53 7811 057, F: +53 7451 512, E: [email protected] GHANA Chapter: Ghana Epilepsy Association, C/O Box M230, Accra, CYPRUS T: +233 2166 5421 ext 4420, E: [email protected] Chapter: Cyprus Association of Support for People with Epilepsy,Arch Kyprianou 15, Flat No 41, Nicosia, T: +357 9967 GREECE 1844, F: +357 2251 8408, E: [email protected] Chapter: Greek National Association against Epilepsy,Aghia Sophia Children’s Hospital, Dept of Neurology/Neurophysiology, CZECH REPUBLIC Athens 11527, T/F: +30 21077 05785, E: [email protected] Chapter: Spolecnost "E", Liskova 3, 14200 Prague 4, T/F: +4202 4172 2136, E: [email protected] GUATEMALA Chapter: IBE Guatemalan Chapter, 6a Calle 2-48, Zona 1, DENMARK Guatemala City,T: + 50 2232 7258, F: +50 2251 4008, Chapter: Dansk Epilepsiforening, Kongensgade 68, 2.Tv., E: [email protected] DK-5000 Odense C, T: +45 6611 9091, F: +45 6611 7117, HONG KONG E: [email protected] Chapter: Hong Kong Epilepsy Association, G/F, Blk 6, Kornhill Friend: Danish Epilepsy Centre, Dianalund, Kolonivej 1, Garden, 1120 King’s Road, Quarry Bay, T: +852 2794 7006, DK-4293, T: +45 5827 1469 , F: +45 5827 1471, F: +852 2794 7178, E: [email protected] E: [email protected] Friend: Enlighten Hong Kong Ltd, 1/F Tang Chi Ngong Clinic, ECUADOR 284 Queen’s Road East,Wanchai, T: +852 2820 0112, Chapter: Centro National de Epilepsia, APNE, Berrutieta F: +852 2820 0113, E: [email protected] sn y Acevedo, (Sector la Gasca), Quito, T: +59 3290 5405, HUNGARY E: [email protected] Chapter: Hungarian Association of People Living with Epilepsy, Friend: Liga Tungurahuense de Control de la Epilepsia, H-1028 Budpest, Hidegkuti ut 353, T/F: 36 1275 8726 Mera 5 - 14 y Sucre, 2 do Piso, Ambato, T: +59 3034 23097 ICELAND ETHIOPIA Chapter: LAUF The Icelandic Epilepsy Association, Hatuni 10b, Chapter: Epilepsy Support Association of Ethiopia, 101 Reykjavik, T: +354 551 4570, F: 354 551 4580, PO Box 25516, Code 1000, Addis Ababa,T: +251 155 3617, E: [email protected] F: +251 155 1981, E: [email protected] INDIA FINLAND Chapter: Indian Epilepsy Association, Sannidhi, K-10/10, DLF Chapter: Epilepsialiitto, Malmin Kauppatie 26, FIN-00700 Qutab Enclave II, Gurgaon-122 002, via Delhi, T: +91 12423 Helsinki,T: +358 9350 82320, F: +358 9350 82322, 50035, F: +91 12423 59277, E: [email protected] E: [email protected] INDONESIA FRANCE Chapter: PERPEI, Bagian Neurologi FKUI, Jl. Salemba 6, Chapter: AISPACE, 11 Avenue Kennedy, F-59800 Lille, Jakarta Pusat 10430,T: +62 2133 5044, F: +62 21314 9424, T: +33 3205 71941, F: +33 3200 94124, E: [email protected] E: [email protected] Friend: Yayasan Epilepsi Indonesia, Jl Senayan No 16 Blok S, Friend: Bureau Francais de l’Epilepsie, 133, rue Falguière, Kebayoran Baru, Jakarta Selatan 12180, T/F: +62 21722 0621, 75013 Paris,T/F: +33 15380 6664, E: [email protected] E: [email protected] Friend: Epilepsie Euro Services, 21 rue de Depart, 75014 Paris, T: +33 15680 1060, F: +33 15680 1061, IRAN E: [email protected] Chapter: Iranian Epilepsy Association, PO Box 15655/199, Tehran, T: +98 21753 3847, F: +98 21869 153, GAMBIA,THE E: [email protected] Provisional Chapter:The Gambia Epilepsy Association, #10 Finland Street, Dippakunda, KMC p.o. box 132, Banjul, IRELAND T: +220 9955 418, F: +220 9922 414, Chapter: Brainwave The Irish Epilepsy Association, E: [email protected] 249 Crumlin Road, Dublin 12,T: +353 1455 7500, F: +353 1455 7013, E: [email protected] GEORGIA Chapter: Epilepsy & Environment Association of Georgia, ISRAEL Dept of Neurology,Tbilisi State Medical University, Chapter: Israel Epilepsy Association, 4 Avodat Yisrael St, Jacob Nicoladze str. 6, appt 22, 380079 Tbilisi, PO Box 1598, Jerusalem 91014, T: +97 2500 0283, T: +995 32233 551, F: +995 32221 965, E: [email protected] F: +97 2253 71044, E: [email protected] GERMANY ITALY Chapter: Deutsche Epilepsie Vereinigung e.V., Zillestrasse 102, Chapter: Associazione Italiano contro l’Epilessia (AICE),Via T D-10585 Berlin, T: +49 30342 4414, F: +40 30342 4466, Marino 7, 20121 Milan, T: +39 02809 299, F: +39 02809 799, E: [email protected] E: [email protected]

Annual Report 2003 21 Contact Directory

JAMAICA NETHERLANDS,THE Chapter: Jamaican Epilepsy Assocaition, 44 Portview Road, Friend: Dr Hans Berger Kliniek, Galderseweg 81, Appt #6, Box 675, Kingston 8, T: +876 969 6717, Postbus 90108, 4800 RA Breda, T: +31 7656 08200, E: [email protected] F: +31 7656 08287, E: [email protected] Friend: National Epilepsie Fonds/De Macht van het Kleine, JAPAN Postbus 270, 3990 GB Houten, T: +31 3063 44063, Chapter: The Japan Epilepsy Association, 5F Zenkokujaidan F: +31 3063 44060, E: [email protected] Building 2-2-8, Nishiwaseda Shinjuku-ku,Tokoy 162-0051, Friend: SEIN, PO Box 21, 2100AA Heemstede, T: +81 3320 25661, F: +81 3320 27235, E: [email protected] T: +31 2355 88000, F: +31 2355 88009, E: [email protected] Friend: Epilepsy Hospital Bethel, 27-4 Hata-Mukaiyama- Friend: Stichting Kempenhaeghe, Sterkselseweg 65, Minami, Kitahase, Iwanuma City 989-2455, T: +81 2232 41211, 5591 VE Heeze, T: +31 4022 79022, F: +31 4022 79111, F: +81 2232 42265, E: [email protected] E: [email protected] Friend: National Epilepsy Centre, Shizuoka Medical Institute of Neurological Disorders, Urushiyama 886, Shizuoka 420-8688, NEW ZEALAND T: +81 54245 5446, F: +81 54247 9781, Chapter: Epilepsy New Zealand (ENZ), PO Box 1074, E: [email protected] Hamilton, T: +64 7834 3556, F: +64 7834 3553, E: [email protected] KENYA Chapter: Kenya Association for the Welfare of Epileptics, PO NIGER Box 60790, Nairobi, T: +254 257 0885, F: +254 257 4871, Chapter: LNCEMNMC, Service de Psychiatrie, E: [email protected] Hopital National de Naimey, BP238 Niamey, T: +227 723 392, F: +227 733 446, E: [email protected] KOREA Chapter: Korean Epilepsy Association, #110-021, NORWAY Room No 301, Buwon Bld, 175-1 Buam-dong, Chongno-ku, Chapter: Norsk Epilepsiforbund, Storgt. 39, 0182 Oslo, Seoul, T: +822 394 2375, F: +822 394 7169, T: +47 2335 3100, F: +47 2335 3101, E: [email protected] E: [email protected] Friend: Songpo Epilepsy Foundation Korea, 302 Dongil B/D, PAKISTAN 170 Insadong, Chongro-ku, Seoul 110290, T: +82 2735 7773, Friend: FLAME, 83 Shah Jamal Colony, Lahore, F: +82 2735 7774 T: +92 4275 81724, F: +92 4275 72488, E: [email protected] LEBANON PERU Provisional Chapter: Association of Care of Epileptic Patients, Chapter: Peruvian Association of Epilepsy, Haret Said, Facing Osseiran Palace, Property of Abdulsatar Al Jr Castilla 678 E-101, Lima 32, T: +51 1460 7502, Assi, Saida, T: +961 3388 713, F: +961 7731 383, E: [email protected] E: [email protected] POLAND LITHUANIA Chapter: Polish Assoc for People Suffering from Epilepsy, Ul Chapter: Lithuanian Society of Epileptic Patients and their Fabryczna 57, 15-482 Bialystok, T/F: +48 8567 54420 Sponsors, Kaunas Medical University Hospital, Dept of PORTUGAL Neurosurgery, Eiveniu 2, LT-3007 Kaunas, T: +370 7733 478, Chapter: Portuguese League against Epilepsy,Av da Boavista, F: +370 7330 477 1015-6º – Sala 601, 4100-428 Oporto, MALAYSIA T/F: +351 22 605 49 59, E: [email protected], Chapter: Persatuan Epilepsi Malaysia, Dept of Neurology, [email protected] Kuala Lumpur Hospital, Jalan Pahang 50586, Kuala Lumpur, ROMANIA T: +603 292 3123, F: +603 291 1186, E: [email protected] Chapter: National Association of People with Epilepsy in MALTA Romania, 6 Rene Descartes Street, Cluj Napoca 3400, Chapter: Caritas Malta Epilepsy Association, c/o Zenit, T/F: +4 0264 599 500, E: [email protected] Paul Borg Street, Attard BZN 04, T: +356 2143 6442, RUSSIAN FEDERATION E: [email protected] Friend: “Mutual Assistance” Epilepsy Association, MAURITIUS Kirovogradskaya ul 7 kv 517, 113587 Moscow, Friend: EDYCS Epilepsy Group (Mauritius), 2nd Floor, T/F: +7 09531 61808, E: [email protected] Puretech Bldg, 8, Impasse Labourdonnais, Port Louis, T: +230 SAUDI ARABIA 508 0904, F: +230 210 5655, E: [email protected] Chapter: Epilepsy Support and Information Centre, PO Box 3354, MEXICO MBC 76, Riyadh, 11211, T: +966 1464 7272 ext 32833, Chapter: Group “Acceptation” of Epileptics, Amsterdam 1928 F: +966 1442 4755, E: [email protected] No 19, Colonia Olimpica-Pedregal, Mexico 04710 DF, SCOTLAND F: +525 575 3250, E: [email protected] Chapter: Epilepsy Scotland, 48 Govan Road, Glasgow G51 1JL, MONGOLIA T: +44 14142 74911, F: +44 14141 91709, Provisional Chapter: Mongolian Epilepsy Society, MNUM, E: [email protected] Sukhbataar distr., Jamyanjarav str., Ulaanbataar, T: +976 9917 Friend: Epilepsy Connections, 100 Wellington Street, Glasgow 7153, F: +976 991 132 6699, E: [email protected] G2 6DH, T: +44 141 248 4125, F: +44 141 248 5887,

22 International Bureau for Epilepsy E: [email protected] THAILAND Friend: Central Scotland Epilepsy Support Association, Chapter: Epilepsy Association of Thailand, Dept of Paediatrics, PO Box 15048, Dunblane FK15 9YA, T: +44 1786 820 116, Faculty of Medicine, Ramathibodi Hospital, Mahidol University, E: [email protected] Rama VI Road, Bangkok 10400, T: +662 201 1488, F: +662 201 1850, E: [email protected] SENEGAL Chapter: Ligue Senegalaise contre l’Epilepsie, Clinique TUNISIA Neurologique, Centre Hospitalo-Universitaire de Fann, BP 5035, Chapter: Tunisian Epilepsy Association, Neurology Dept, Dakar-Fann, T: +221 825 3678, F: +221 864 0339, EPS Charles Nicolle, 12, Rue 3 Septembre,Tunis 1006, E: [email protected] T/F: +216 7156 2834, E: [email protected] SERBIA MONTENEGRO UGANDA Chapter: Serbian Montenegrin Society for Epilepsy, Slobodana Chapter: Epilepsy Support Association, PO Box 16260, Penezica-Krcuna 23, Beograd, T: +381 1168 6155 ext 137, Wandegeya, Kampala, T/F: +256 4852 0596, E: F: +381 1168 6656, E: [email protected] [email protected] SINGAPORE UK Chapter: Singapore Epilepsy Foundation, 149 Rocher Road, Chapter: , New Anstey House, Gate Way Drive, #04-07 Fu Lu Shou Complex, 188425 Singapore, Yeadon, Leeds LS19 7XY, T: +44 113 210 8800, T: +65 3344 302, F: +65 3344 669, E: [email protected] F: +44 113 210 8856, E: [email protected] Friend: Epilepsy Care Group (Singapore), No 26 Dunearn Road Friend: National Society for Epilepsy, Chesham Lane, Chalfont (Level 2), Singapore 309423, T: +65 6358 0566, St Peter, Bucks SL9 ORJ, T: +44 1494 601 442, F: +65 6358 0567, E: [email protected] F: +44 1494 871 927, E: [email protected] SLOVENIA Friend: , Mill Lane,Warford, Near Alderley Chapter: Slovenian League against Epilepsy, Institute of Clinical Edge, Cheshire SK9 7UD, T: +44 1565 640 000, Neurophysiology, Hospital of Neurology, Medical Centre, F: +44 1565 640 200, E: [email protected] SL-1525 Ljubljana, T: +386 1522 9200, F: +386 1522 9357, Friend: National Centre for Young People with Epilepsy, St Piers E: [email protected] Lane, Lingfield, Surrey RH7 6PW, T: +44 1342 832 243, F: +44 1342 834 639, E: [email protected] SOUTH AFRICA Friend: Gravesend Epilepsy Network, 13 St George’s Cresent, Chapter: Epilepsy South Africa, PO Box 73, Observatory 7935, Gravesend DA12 4AR, T/F: +44 1474 351 673, Capetown,T: +27 2144 73014, F: +27 2144 85053, E: [email protected] E: [email protected] Friend: Fund for Epilepsy,The, 38 Buckingham Palace Road, SPAIN London SW1W 0RE, T: +44 20 7592 3270, F: +44 20 7821 Chapter: Asociación Espanola de Ayuda al Epileptico: 5000, E: [email protected] c/Berlin 5, 4o Piso, 28028 Madrid, T: +34 91726 2727, Friend:Wales Epilepsy Association, 15 Chester Street, St Asaph, F: +34 91356 0926, E: [email protected] Denbighshire LL17 ORE, T/F: +44 1745 584 444, E: [email protected] SRI LANKA Chapter:The Epilepsy Association of Sri Lanka, No 10 Austin USA Place, Colombo 8, T: +94 1867 387, E: [email protected] Chapter: Epilepsy Foundation, 4351 Garden City Drive, 5th Floor, Landover, Maryland 20785. T: +1 301 459 3700, SWEDEN F: +1 301 459 0340, E: [email protected] Chapter:The Swedish Epilepsy Association, PO Box 1386, Friend: Epilepsy Foundation of New Jersey, 172 27 Sundbyberg, T: +46 866 94106, F: +46 866 91588, 429 River View Plaza,Trenton, New Jersey 08611, E: [email protected] T: +1 6090 392 4900, F: +1 609 392 5621, E: [email protected] SWITZERLAND Friend: Epilepsy Centre Services, North Western Ohio, 5405 Chapter: epi-suisse, Seefeldstrasse 84, Postfach 313, Southwyck Blvd Suite 100,Toledo, OH43614,T: +1 419 867 CH-8034 Zurich, T: +41 4348 86880, F: +41 4388 8688, 5950, F: +1 419 867 5954, E: [email protected] E: [email protected] Friend: Par Epi, Seefeldstrasse 84, CH-8008 Zurich, VENEZUELA T: +41 4348 886560, F: +41 4348 86881, E: [email protected] Chapter:Venezuelan National Bureau, Edificio Integral, Friend: Swiss Epilepsy Center, Bleulerstrasse 60, CH-8008 Avenida Venezuela, Urbanización "El Rosal", Piso 1, Caracas, Zurich, T: +41 1387 6202, F: +41 1387 6249, T: +58 414 126 6828, F: +58 212 951 7258, E: [email protected] E: [email protected] TAIWAN ZAMBIA Chapter:Taiwan Epilepsy Association, 1st Floor, No 5, Alley 2, Chapter: Epilepsy Association of Zambia, Motaxis Building, Lane 199, Tun-Hwa N. Road,Taipei 105, T: +886 2251 49682, Kalundwe Road, PO Box 32443, Lusaka, T: +260 9645 9688, F: +886 2251 49687, E: [email protected] E: [email protected] TANZANIA, UNITED REPUBLIC OF ZIMBABWE Chapter: Parents Organisation for Children with Epilepsy Chapter: Epilepsy Support Foundation, PO Box 104, Avondale, (POCET), PO Box 65293, Dar Es Salaam, T: +744 822 517, Old General Hospital, Mazoe Street, Harare, T: +263 472 4071, E: [email protected] E: [email protected]

Annual Report 2003 23 International Bureau for Epilepsy, Administration Office, 253 Crumlin Road, Dublin 12, Ireland Tel: +353 1 456 0298 Fax: +353 1 455 4648 Email: [email protected] www.ibe-epilepsy.org