“ OUT OF THE SHADOWS” A Global Campaign against Epilepsy Campaign Secretariat: Hanneke M. de Boer - IBE Jerome Engel JR - ILAE Leonid L. Prilipko - WHO.

“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

•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

• 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 SHADOWS”


• The Partners: The International League against Epilepsy (ILAE)

The

International Bureau for Epilepsy (IBE)

World Health Organisation (WHO)

• The Partners: The International League against Epilepsy (ILAE)

The

International Bureau for Epilepsy (IBE)

World Health Organisation (WHO)



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

“EPILEPSY OUT OF THE SHADOWS” “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

• 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


Number of countries involved:

- AFRO 20

- AMRO/PAHO 15

- EMRO 5

- EURO 35

- WPRO 5

- SEARO 5

Total: >85

Number of countries involved:

- AFRO 20

- AMRO/PAHO 15

- EMRO 5

- EURO 35

- WPRO 5

- SEARO 5

Total: >85


• 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


• 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

• 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


• Raising Awareness: The Achievements 1998 – 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

• Raising Awareness: The Achievements 1998 – 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


• 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


• 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


• Coordination of Demonstration Projects (illustrating good practice in providing services to pwe) - The Achievements

Achievements 2001 - 2005

• AFRO Senegal, Zimbabwe, Kenya, Congo

• AMRO Argentina, Brazil

• EMRO Pakistan, Afghanistan, Djibouti, Sudan, Somalia, Yemen

• EURO Georgia, Italy, Russia

• SEARO India, Indonesia, Myanmar, Nepal, D.P. Korea

• WPRO China 6 provinces + 10 provinces, Vietnam

• Coordination of Demonstration Projects (illustrating good practice in providing services to pwe) - The Achievements

Achievements 2001 - 2005

• AFRO Senegal, Zimbabwe, Kenya, Congo

• AMRO Argentina, Brazil

• EMRO Pakistan, Afghanistan, Djibouti, Sudan, Somalia, Yemen

• EURO Georgia, Italy, Russia

• SEARO India, Indonesia, Myanmar, Nepal, D.P. Korea

• WPRO China 6 provinces + 10 provinces, Vietnam


• 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

• 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


• 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

• 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


• 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


Questionnaires on Country Resources

Regions No. countries Populationwise

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 others 97%

April 2005

Questionnaires on Country Resources

Regions No. countries Populationwise

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 others 97%

April 2005


• 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


• 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


• 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


Within the framework of Campaign consensus guidelines are being developed on the treatment of epilepsy in childhood and adolescence



• 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.


• 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.


• Funding - Fundraising

ILAE/IBE: administrative running Campaign WHO HQ: (Demonstration) Projects, meetings WHO Regional Offices: Regional Reports

AMRO/PAHO, EMRO, SEARO and WPRODemonstration 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


ILAE/IBE: administrative running Campaign WHO HQ: (Demonstration) Projects, meetings WHO Regional Offices: Regional Reports

AMRO/PAHO, EMRO, SEARO and WPRODemonstration 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



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


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


• “OUT OF THE SHADOWS” A Global Campaign against Epilepsy

a model for WHO activities

PARTNERSHIP

• “OUT OF THE SHADOWS” A Global Campaign against Epilepsy

a model for WHO activities

PARTNERSHIP

E P I L E P S Y

“O u t o f t h e S h a d o w s”


“ OUT OF THE SHADOWS” A Global Campaign against Epilepsy Campaign Secretariat: Hanneke M. de Boer - IBE Jerome Engel JR - ILAE Leonid L. Prilipko - WHO.

Documents

epilepsy ilae

active epilepsy

regional reports assistance

epilepsy campaign secretariat

regional declarations

shadows number of countries

newsletters assistance

fundraising slide