The International Bureau for Epilepsy (IBE)

The International Bureau for Epilepsy (IBE) works to improve the social condition and quality of life of people with epilepsy and those who care for them. We have a vision of the world where everywhere ignorance and fear about epilepsy are replaced by understanding and care.

The IBE is made up of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. We address social problems such as education, employment, insurance, driving licence restrictions and public awareness.

We do this through funding social improvement programmes for people with epilepsy and their families, creating means for worldwide exchange of information and, where possible, setting standards which provide an international policy focus and identity for all persons with epilepsy.

Much of this work is accomplished through the IBE working commissions, composed of volunteers who are experts in their subjects.

The IBE was established in 1961 and has grown to almost 140 chapters (members) in over 100 countries all around the globe. The Bureau is the recognised international umbrella body representing national epilepsy organisations that have a specific interest in improving the social condition and quality of life of people with epilepsy and their carers.

The IBE is an incorporated, not-for-profit, international organisation constituted in accordance with law and registered in the District of Columbia, USA. (Charter ID 721834-DNP).

The Bureau also works in close liaison with the International League against Epilepsy (ILAE), an organisation of medical professionals involved in the medical and scientific issues of epilepsy. IBE is funded mainly by membership dues from its chapters and by financial support from other contributors.

How we achieve our objectives:

In order to accomplish our objectives of organisation, support, communication, education and representation, IBE:

• Promote research into the social aspects of epilepsy
• Spread information abo­­­­­ut epilepsy and our work through online platforms, newsletters and reports
• Promote effective partnerships between epilepsy organisations
• Encourages education on epilepsy through new and innovative training initiatives
• Stimulate the formation and continued development of organisations of people with epilepsy and those who care for them in all countries
• Help chapters in developing nations to improve life for people with epilepsy in their countries
• Organise international and regional conferences, congresses, and other  meetings to push forward developments in epilepsy treatment and care
• Work in collaboration with the ILAE on activities including the Global Campaign Against Epilepsy and congresses
• Work closely with other bodies, such as the World Health Organization, with which IBE has been in official working relations for many years. (Member in Special Consultative Status on the Economic and Social Council of the United Nations (ECOSOC); member of CoNGO – the Conference of Non-Governmental Organisations.)

IBE African Regional Committee

The African Regional Committee is the second largest of IBE’s seven regional structures and has grown steadily since 2000. IBE now has chapters in 22 countries in the region but, with a total of 58 countries in Africa, there remain enormous gaps to be filled. The African continent has a population of over 1.2 billion, as compared to 750 million in Europe, giving an estimated minimum epilepsy prevalence of 12 million. The true figure is likely to be significantly higher.

Every IBE chapter in Africa is a Member of the Regional Committee Africa with its elected Regional Executive Committee overseeing activities in the region, in line with its Terms of Reference