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“ OUT OF THE SHADOWS” A Global Campaign against Epilepsy

“ 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. “EPILEPSY OUT OF THE SHADOWS” . The Figures:

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“ OUT OF THE SHADOWS” A Global Campaign against Epilepsy

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  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

  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

  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

  5. “EPILEPSY OUT OF THE SHADOWS” • The Strategy • I.Provide platform for general awarenesse.g. Regional Conferences on Public Health, Declarations, White papers, Regional Reports • II. Assist Departments of Health in the development of National Epilepsy Strategye.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:- AFRO 20- AMRO/PAHO 15- EMRO 5- EURO 35- 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

  8. “EPILEPSY OUT OF THE SHADOWS” • Raising Awareness - Regional Conferences*GoalsDevelop and adopt Regional Declarations on Epilepsy*Participants:Delegates of national + internationalIBE/ILAEPublic health experts of governments + universities Representatives of Regional WHO + WHO HQ

  9. “EPILEPSY OUT OF THE SHADOWS” • Raising Awareness: The Achievements1998 – 2003 Regional 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)2003 Russia, 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

  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

  12. “EPILEPSY OUT OF THE SHADOWS” • Coordination of Demonstration Projects (illustrating good practice in providing services to pwe) - The AchievementsAchievements2001 - 2005 • AFRO Senegal, Zimbabwe, Kenya, Congo • AMRO Argentina, Brazil • EMROPakistan, Afghanistan, Djibouti, Sudan, Somalia, Yemen • EUROGeorgia, Italy, Russia • SEAROIndia, Indonesia, Myanmar, Nepal, D.P. Korea • WPRO China 6 provinces + 10 provinces, Vietnam

  13. “EPILEPSY OUT OF THE SHADOWS” • CHINAPrior 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 6 16 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

  16. “EPILEPSY OUT OF THE SHADOWS” • Questionnaires on Country Resources • Regions No. countries PopulationwiseAFRO                                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 others 97%April 2005

  17. “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

  18. “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

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

  20. “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.

  21. “EPILEPSY OUT OF THE SHADOWS” • Funding - FundraisingILAE/IBE: administrative running CampaignWHO HQ: (Demonstration) Projects, meetings WHO Regional Offices: Regional Reports AMRO/PAHO, EMRO, SEARO and WPRO Demonstration Projects SEARO WHO Collaborating Centres:Regional Report, GuidelinesCharities: 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

  22. “EPILEPSY OUT OF THE SHADOWS” • Funding - Fundraising Grants CollaborativeResearch OnEpilepsyStigma Project - CREST • Funder:National Institute of Health - NIH/FogartyInternational Centre Planning & Development Grant • Initiator:World Health Organization - WHO • Involvement Global Campaign Against Epilepsy

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

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

  25. “EPILEPSY OUT OF THE SHADOWS”

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