1. “ OUT OF THE SHADOWS” A Global Campaign against Epilepsy Campaign Secretariat: Hanneke M. de Boer - IBE Jerome Engel JR - ILAE Leonid L. Prilipko - WHO SEIN P.O. Box 540 2130 AM Hoofddorp, The Netherlands Campaign Secretariat: Hanneke M. de Boer - IBE Jerome Engel JR - ILAE Leonid L. Prilipko - WHO SEIN P.O. Box 540 2130 AM Hoofddorp, The Netherlands

2. “EPILEPSY OUT OF THE SHADOWS” The Figures: 250.000.000: one seizure in a life time 50.000.000: people with active epilepsy 42.500.000: pwe in developing countries 2.500.000: new cases each year 80% of aed’s sold in 20% of countries 70% pwe can be seizure free with treatment 80% not properly diagnosed, not treated The Figures: 250.000.000: one seizure in a life time 50.000.000: people with active epilepsy 42.500.000: pwe in developing countries 2.500.000: new cases each year 80% of aed’s sold in 20% of countries 70% pwe can be seizure free with treatment 80% not properly diagnosed, not treated

3. “EPILEPSY OUT OF THE SHADOWS” The Partners: The International League against Epilepsy (ILAE) The International Bureau for Epilepsy (IBE) World Health Organisation (WHO)

4. “EPILEPSY OUT OF THE SHADOWS” Mission Statement To improve the acceptability, treatment, services and prevention of epilepsy worldwide Mission Statement To improve the acceptability, treatment, services and prevention of epilepsy worldwide

5. “EPILEPSY OUT OF THE SHADOWS” The Strategy I. Provide platform for general awareness e.g. Regional Conferences on Public Health, Declarations, White papers, Regional Reports II. Assist Departments of Health in the development of National Epilepsy Strategy e.g. Demonstration Projects, Assessment of country needs and resources, Providing technical information and support for national initiatives The Strategy I. Provide platform for general awareness e.g. Regional Conferences on Public Health, Declarations, White papers, Regional Reports II. Assist Departments of Health in the development of National Epilepsy Strategy e.g. Demonstration Projects, Assessment of country needs and resources, Providing technical information and support for national initiatives

6. “EPILEPSY OUT OF THE SHADOWS”  Number of countries involved: - AFRO20 - AMRO/PAHO15 - EMRO 5 - EURO35 - WPRO 5 - SEARO 5  Total: >85  Number of countries involved: - AFRO20 - AMRO/PAHO15 - EMRO 5 - EURO35 - WPRO 5 - SEARO 5  Total: >85

7. “EPILEPSY OUT OF THE SHADOWS” Main Activities Assistance with Regional Conferences Coordination of Demonstration Projects Assessment of Country Resources Assistance with the Regional Reports Assistance with the development of evidence- based guidelines Sessions during International Congresses Publications, including Newsletters (Assistance with) Fundraising Main Activities Assistance with Regional Conferences Coordination of Demonstration Projects Assessment of Country Resources Assistance with the Regional Reports Assistance with the development of evidence- based guidelines Sessions during International Congresses Publications, including Newsletters (Assistance with) Fundraising

8. “EPILEPSY OUT OF THE SHADOWS” Raising Awareness - Regional Conferences * Goals Develop and adopt Regional Declarations on Epilepsy *Participants: Delegates of national + international IBE/ILAE Public health experts of governments + universities Representatives of Regional WHO + WHO HQ

9. “EPILEPSY OUT OF THE SHADOWS” Raising Awareness: The Achievements 1998 – 2003Regional Conferences in all (6) WHO Regions – Adoption of Declarations 2001 Launch 2nd Phase Campaign Endorsement European White Paper by WHO EURO and HQ (in collaboration with EUCARE) 2003Russia, Sub-Regional Conference

10. “EPILEPSY OUT OF THE SHADOWS” Demonstration Projects: General Objectives Reduce treatment gap and social and physical burden Educate health personnel Dispel stigma Prevention Develop models for promotion of epilepsy control world wide Integration of epilepsy care in health systems Demonstration Projects: General Objectives Reduce treatment gap and social and physical burden Educate health personnel Dispel stigma Prevention Develop models for promotion of epilepsy control world wide Integration of epilepsy care in health systems

11. “EPILEPSY OUT OF THE SHADOWS” Ultimate Goal: Development of a variety of successful models of epilepsy control that will be integrated into the health care systems of the participating countries and regions and, finally, applied on a global level Ultimate Goal: Development of a variety of successful models of epilepsy control that will be integrated into the health care systems of the participating countries and regions and, finally, applied on a global level

12. “EPILEPSY OUT OF THE SHADOWS” Coordination of Demonstration Projects (illustrating good practice in providing services to pwe) - The Achievements Achievements 2001 - 2005 AFROSenegal, Zimbabwe, Kenya, Congo AMROArgentina, Brazil EMROPakistan, Afghanistan, Djibouti, Sudan, Somalia, Yemen EUROGeorgia, Italy, Russia SEAROIndia, Indonesia, Myanmar, Nepal, D.P. Korea WPROChina 6 provinces + 10 provinces, Vietnam Coordination of Demonstration Projects (illustrating good practice in providing services to pwe) - The Achievements Achievements 2001 - 2005 AFROSenegal, Zimbabwe, Kenya, Congo AMROArgentina, Brazil EMROPakistan, Afghanistan, Djibouti, Sudan, Somalia, Yemen EUROGeorgia, Italy, Russia SEAROIndia, Indonesia, Myanmar, Nepal, D.P. Korea WPROChina 6 provinces + 10 provinces, Vietnam

13. “EPILEPSY OUT OF THE SHADOWS” CHINA Prior to Demonstration Project: Estimated prevalence: 5.000.000 Following Demonstration Project: Estimated prevelance: 9 - 12.000.000 World wide prevalence of epilepsy + treatment gap massive underestimates

14. “EPILEPSY OUT OF THE SHADOWS” Ultimate Goal: Demonstration Project in China Approval from Ministry of Health Expansion: 30 counties in 10 provinces 616 provinces: 18.000.000 population Funding: administrative and financial support through local governments. Project sustainable Ultimate Goal: Demonstration Project in China Approval from Ministry of Health Expansion: 30 counties in 10 provinces 616 provinces: 18.000.000 population Funding: administrative and financial support through local governments. Project sustainable

15. “EPILEPSY OUT OF THE SHADOWS” Assessment of Country Resources on Epilepsy Questionnaires on Country Resources for Epilepsy Aim: Map needs and resources for epilepsy world wide Recipients: IBE/ILAE members WHO member states Assessment of Country Resources on Epilepsy Questionnaires on Country Resources for Epilepsy Aim: Map needs and resources for epilepsy world wide Recipients: IBE/ILAE members WHO member states

16. “EPILEPSY OUT OF THE SHADOWS”  Questionnaires on Country Resources  RegionsNo. countriesPopulationwise AFRO 37 (76,1%) 90.2% AMRO 25 (71,4%) 97.2% EURO 45 (86,5%) 97,6% EMRO 15 (71,4%) 89.8% SEARO 8 (72.7%) 98.5% WPRO 23 (85.2%) 99.9% Total 153 (78,1%) + 5 others97% April 2005  Questionnaires on Country Resources  RegionsNo. countriesPopulationwise AFRO 37 (76,1%) 90.2% AMRO 25 (71,4%) 97.2% EURO 45 (86,5%) 97,6% EMRO 15 (71,4%) 89.8% SEARO 8 (72.7%) 98.5% WPRO 23 (85.2%) 99.9% Total 153 (78,1%) + 5 others97% April 2005

18. “EPILEPSY OUT OF THE SHADOWS” Atlas: Epilepsy Care in the World Objectives Collect, compile, disseminate information on epilepsy resources Analyse globally + regionally epilepsy resources data Provide baseline for monitoring purposes over time Drive global and regional epilepsy programmes Make the world more aware of deficiency of epilepsy resources Provide impetus ton international efforts to enhance resources Atlas: Epilepsy Care in the World Objectives Collect, compile, disseminate information on epilepsy resources Analyse globally + regionally epilepsy resources data Provide baseline for monitoring purposes over time Drive global and regional epilepsy programmes Make the world more aware of deficiency of epilepsy resources Provide impetus ton international efforts to enhance resources

19. “EPILEPSY OUT OF THE SHADOWS” Regional Reports Reports on the implementation of the GCAE, including data, collected through questionnaires Aims: - advocacy tool - instrument for dialogue Contents: - basic knowledge on epilepsy - basic facts epidemiological burden Regional Reports Reports on the implementation of the GCAE, including data, collected through questionnaires Aims: - advocacy tool - instrument for dialogue Contents: - basic knowledge on epilepsy - basic facts epidemiological burden

20. “EPILEPSY OUT OF THE SHADOWS” Assistance with the Development of Guidelines Within the framework of Campaign consensus guidelines are being developed on the treatment of epilepsy in childhood and adolescence

21. “EPILEPSY OUT OF THE SHADOWS” Assistance with the Development of Guidelines Action plan GCAE: evidence based guidelines: *treatment in childhood and adolescence *burden of epilepsy *treatment with essential drugs Oasi Centre Sicily, Italy - facilitator Guidelines: WHO activity under the GCAE with the input of IBE/ILAE experts. Process will be controlled by WHO. Assistance with the Development of Guidelines Action plan GCAE: evidence based guidelines: *treatment in childhood and adolescence *burden of epilepsy *treatment with essential drugs Oasi Centre Sicily, Italy - facilitator Guidelines: WHO activity under the GCAE with the input of IBE/ILAE experts. Process will be controlled by WHO.

22. “EPILEPSY OUT OF THE SHADOWS” Funding - Fundraising ILAE/IBE: administrative running Campaign WHO HQ: (Demonstration) Projects, meetings WHO Regional Offices: Regional Reports AMRO/PAHO, EMRO, SEARO and WPRO Demonstration Projects SEARO WHO Collaborating Centres:Regional Report, Guidelines Charities: Rotary (1), Dutch National Epilepsy Fund (2) - Projects: Project amongst immigrants - Italy (1) Demonstration Projects in Georgia and Kenya (2) Industry:Atlas, Regional Report, Demonstration Project

23. “EPILEPSY OUT OF THE SHADOWS” Funding - Fundraising Grants Collaborative Research On Epilepsy Stigma Project - CREST Funder: National Institute of Health - NIH/Fogarty International Centre Planning & Development Grant Initiator: World Health Organization - WHO Involvement Global Campaign Against Epilepsy Funding - Fundraising Grants Collaborative Research On Epilepsy Stigma Project - CREST Funder: National Institute of Health - NIH/Fogarty International Centre Planning & Development Grant Initiator: World Health Organization - WHO Involvement Global Campaign Against Epilepsy

24. “EPILEPSY OUT OF THE SHADOWS” “ OUT OF THE SHADOWS” A Global Campaign against Epilepsy a model for WHO activities PARTNERSHIP

25. E P I L E P S Y “O u t o f t h e S h a d o w s”

26. “EPILEPSY OUT OF THE SHADOWS”