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“ 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
“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
“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
epilepsy out of the shadows3
“EPILEPSY OUT OF THE SHADOWS”
  • The Partners:The International League against Epilepsy (ILAE) The International Bureau for Epilepsy (IBE) World Health Organisation (WHO)
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“EPILEPSY OUT OF THE SHADOWS”

Mission Statement

To improve the acceptability, treatment, services and prevention of epilepsy worldwide

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“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
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“EPILEPSY OUT OF THE SHADOWS”
  • Number of countries involved:- AFRO 20- AMRO/PAHO 15- EMRO 5- EURO 35- WPRO 5- SEARO 5
  • Total: >85
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“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
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“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
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“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
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“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
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“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
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“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
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“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
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“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
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“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
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“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
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“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
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“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
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“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
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“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.
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“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
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“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
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“EPILEPSY OUT OF THE SHADOWS”
  • “OUT OF THE SHADOWS”A Global Campaign against Epilepsy a model for WHO activities PARTNERSHIP
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E P I L E P S Y

“O u t o f t h e S h a d o w s”

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