Phase I: 1997 – 2001
The Global Campaign was launched with an initial focus on raising public, professional and political awareness of epilepsy. Special conferences were held in every region of the world. Regional declarations were drafted and approved identifying the scale and scope of problems and outlining actions required to deal with these.

Phase II: 2001 – 2005
The advocacy work begun in phase I continued with the promotion of the regional declarations. The focus of phase II was the development of demonstration projects. In summary the objectives of the demonstration projects were and still remain: –

• To reduce the treatment gap and the physical and social morbidity of people suffering from epilepsy by intervention at a community level.
• To train and educate health professionals.
• To dispel stigma and promote a positive attitude to people with epilepsy in the community.
• To identify and assess the potential for prevention of epilepsy.
• To develop models for promotion of epilepsy control and for its integration in the health systems of participating countries.

Demonstration projects have been successfully completed in China, Zimbabwe, Senegal and Brazil.

Phase III: 2005 – 2009
IBE and ILAE will develop a greater regional involvement in the Campaign by linking it more closely to their respective regional representative structures.

Campaign activities, 2005 – 2009
The following represent the focus of activity in the period 2005 -2009.

1. Demonstration projects in general
• The completion of projects underway from phase I and phase II.
• The adoption and/or transfer of completed projects into permanent features. For example, the Brazilian demonstration project is being used to form a new national epilepsy program in Brazil.
• The consideration of new projects.

2. Demonstration project on epilepsy surgery
Epilepsy surgery is a safe and effective alternative treatment for a wide variety of epileptic conditions that cannot adequately be treated with AEDs. Investment in epilepsy surgery centres, even in the poorest regions, could greatly reduce the economic and human burden of epilepsy. Yet there is a marked treatment gap with respect to epilepsy surgery even in richer countries. 80% of the cost of epilepsy is due to patients whose seizures are not controlled with drugs. 80% of the burden of epilepsy is in the developing world. Most patients with surgically remediable epilepsy can now be diagnosed non-invasively with EEG and MRI. The major investment for epilepsy surgery is in appropriately trained personnel. Surgical treatment should, and can, be made available to people who live in developing countries. In view of all this, the Global Campaign is testing the feasibility of a demonstration project on surgery, possibly to be undertaken in collaboration with the World Federation of Neurosurgical Societies (WFNS).

3. Regional Epilepsy Atlases
Following on from the success of the global ‘Epilepsy Atlas’, it is intended to develop an ‘Epilepsy Atlas’ for each region of the world identifying resources and gaps in more detail in individual countries.

4. The publication of a series of regional reports on the status of epilepsy

5. The completion of guidelines on the treatment of epilepsy in childhood and adolescence

6. The promotion of multicentric collaborative studies linking centres in developing and developed countries
A number of important aspects of epilepsy research need collaborative studies that involve countries belonging to different parts of the world. Typical examples are epidemiological and genetic studies and clinical trials. The aims of this activity are: – • To identify research priorities and needs at a regional level.
• To stimulate collaborative studies involving countries with different economic situations.
• To develop guidelines and recommendations to facilitate interactions between participants.

7. Collaborative Research on Epilepsy and Stigma (CREST) Project – studying stigma in China and Vietnam.
This project on stigma is a continuation of a study started in 2004. It is made possible by the United States National Institutes of Health (NIH) Fogarty foundation preparatory grant (TW-03-007). The project aims to develop culturally appropriate approaches to reduce stigma and discrimination. The results of an initial literature search guide further developments of the project, starting with ethnographic studies exploring the prevailing beliefs and attitudes to epilepsy in China and Vietnam. Using in-depth interviews and focus groups, data will be gathered from people with epilepsy, their family members, their local communities and their general and specialized healthcare workers. It is anticipated that study findings will provide insights into the dimensions of epilepsy stigma identifiable in these two countries and highlight the similarities and differences in order to gain an understanding of the following: – • Ideas held about epilepsy (explanatory models of causation, treatment, prevention).
• The impact of these ideas on attitudes toward having epilepsy.
• Ideas and practices relating to its management as a health condition.
• Ideas and practices relating to its management as a potential source of stigma.

8. A review of legislation worldwide and its impact on the lives of people with epilepsy
The right to equal treatment is clearly described in international law (for example, United Nations and EU charters and treaties) and deserves the protection of enforceable legal remedies. However, experience indicates that some laws in some countries that impact on the lives of people with epilepsy are outdated and fail to adequately promote and protect human rights. In some cases laws even actively violate rights, often due to being based on centuries of stigmatisation. Furthermore, in many countries legislation is totally absent.

Well crafted legislation that is based on internationally accepted human rights standards can prevent violations and discrimination; promote and protect human rights; enhance the autonomy and liberty of people with epilepsy; and improve equity in access to healthcare services and community integration. Legislation can serve to legally enforce the goals and objectives of policies and programs related to epilepsy.

This project on epilepsy and legislation aims to collect information on existing legislation and regulations related to epilepsy in the areas of civil rights, education, employment, residential and community services, and provision of appropriate healthcare from countries all over the world. This information will be collated in order to review the comprehensiveness and adequacy of these legal measures in promoting and protecting the civil and human rights of people with epilepsy.

In particular the project will: –

• Identify key human rights issues that are being overlooked and that need to be addressed at national / regional levels.
• Develop an effective reference guide for professionals working in the area of epilepsy, lawyers and policy-makers as well as advocacy and human rights organisations working in the interest of people with epilepsy at national as well as international levels.
• Provide instruments for advocacy and lobbying to improve human rights conditions for people with epilepsy.
• Provide useful tools to reform laws and regulations related to epilepsy thus leading to better care and services and improved living conditions for people with epilepsy throughout the world.
• Increase awareness among people with epilepsy of the possibilities available to them for better integration into society, helping to reduce discrimination and stigma associated with epilepsy.

9. A survey of Campaign activities at national level to better appreciate the range and scale of the Campaign’s impact

10. The development of the Global Campaign on the internet

11. The development of a fundraising strategy for the Campaign