1. WHO views on and commitments towards epilepsy Tarun Dua

2. Epilepsy and WHO | 17 Oct 2008 2 |2 | Epilepsy: priority area for WHO The past The present And the future………….

3. Epilepsy and WHO | 17 Oct 2008 3 |3 | WHO Programme on Neurological Diseases and Neuroscience Emphasis on public health aspects Comprehensive analysis of problem Information on country resources and services Technical guidance on prevention and management Strengthen capacities of countries to improve neurological care In collaboration with relevant stakeholders

4. Epilepsy and WHO | 17 Oct 2008 4 |4 | Epilepsy: the facts Epilepsy is the most common serious brain disorder Epilepsy is one of oldest disorders known (epileptics seized by the gods or the devil) People with epilepsy viewed with fear, suspicion and misunderstanding People with epilepsy subject to horrendous stigma Many people with epilepsy suffer in silence, afraid to be found out

5. Epilepsy and WHO | 17 Oct 2008 5 |5 | Epilepsy: 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

6. Epilepsy and WHO | 17 Oct 2008 6 |6 | Epilepsy: The Global Campaign 1995In WHO : revival activities + collaboration with neurology and neurosciences Increased collaboration with NGO’s Partnership between Professional (ILAE), Public/Patients (IBE) and Political (WHO) Organizations (Dr. L.L.Prilipko + Prof. E.H. Reynolds) WHOILAE

7. Epilepsy and WHO | 17 Oct 2008 7 |7 | “OUT OF THE SHADOWS” A Global Campaign against Epilepsy The Partners: The International League Against Epilepsy (ILAE) The International Bureau for Epilepsy (IBE) World Health Organization (WHO)

8. Epilepsy and WHO | 17 Oct 2008 8 |8 | What is the Global Campaign? Mission Statement To improve the acceptability, treatment, services and prevention of epilepsy worldwide The Strategy I. Provide platform for general awareness II. Assist Departments of Health in the development of National Epilepsy Strategy

9. Epilepsy and WHO | 17 Oct 2008 9 |9 | GCAE: The Objectives Increase public and professional awareness of epilepsy as a universal and treatable brain disorder Raise epilepsy to a new plane of acceptability in the public domain Promote public and professional education about epilepsy Identify the needs of people with epilepsy at national and regional levels. Encourage governments and departments of health, to address the needs of people with epilepsy including awareness, education, diagnosis, treatment, care, services and prevention

10. Epilepsy and WHO | 17 Oct 2008 10 | GCAE: The activities Awareness and advocacy Normative work Information on country resources and services Country projects

11. Epilepsy and WHO | 17 Oct 2008 11 | Regional Conferences Goal: 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 Results: Between 1998-2003, conferences organized in all 6 WHO regions

12. Epilepsy and WHO | 17 Oct 2008 12 | Regional Reports Contents  basic knowledge on epilepsy  basic facts such as epidemiological burden Results  AFROpublished 2005  AMROpublished in 2008  EMROin progress  EURO(almost) ready for publication  SEAROpublished 2005  WPROpublished 2005

14. Epilepsy and WHO | 17 Oct 2008 14 |

15. Epilepsy and WHO | 17 Oct 2008 15 | Epilepsy Atlas: Conclusions Facts and figures that are useful to promote greater awareness of the need for action among planners and policy-makers Available resources for epilepsy care are insufficient with large inequities across regions and income groups of countries Need for urgent, substantial and systematic aciton to enhance reources for epilepsy care within countries

16. Epilepsy and WHO | 17 Oct 2008 16 | Has Project Atlas been useful? Yes! Generated awareness among health professionals to collect data about resources It has been used extensively for advocacy especially in developing countries Useful source of information for policy makers, academic professionals and public health experts Helpful for monitoring of resources

17. Epilepsy and WHO | 17 Oct 2008 17 | Project on Global Burden of Epilepsy GBD 2005: systematic assessment of the data on all disease and injuries and produce comprehensive and comparable estimates of the burden of diseases, injuries and risk factors for two time periods, 1990 and 2005 Comprehensive estimates of the burden of disease due to –Idiopathic epilepsy –Secondary epilepsy –Epilepsy as a risk factor