Epilepsy is one of the most common serious diseases affecting more than 50 million people globally. There are many difference causes for epilepsy including genetic disposition, head trauma or brain tumour; it may also develop as a result of stroke, infection or neurodegenerative disease.
Epilepsy is more than a medical diagnosis; it affects almost every aspect in the life of the person diagnosed with the disease – imposing serious psychosocial and social burdens on both the person with epilepsy and their families. For many people with epilepsy, the stigma attached to the disease is more difficult to deal with than the disease itself.
Of concern is the fact that it is estimated that up to 100,000 premature deaths each year, may be attributable to epilepsy. Many of these could be prevented with appropriate medication and treatment.
In the developed world, up to 60% of people with epilepsy will have their seizures controlled with medication; however, in developing regions, it is estimated that up to 90% of people with epilepsy will not receive any regular treatment. Of the 50 million people living with epilepsy worldwide, 80% live in developing countries.
One in 10 people will experience one seizure during their lifetime. On average, one in every 100 people will develop epilepsy. In the developing world, the incidence is significantly higher.
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). Founded in Rome in 1961, 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.
IBE exists to improve the social condition and quality of life of people with epilepsy and those who care for them. There is no other similar credible organisation with the same broad Goals and Objectives or the same constituency of stakeholders as IBE.
- To provide a broader understanding of the nature of epilepsy and the needs of persons with epilepsy
- To promote the formation of organisations of persons with epilepsy, their relatives and their friends
- To promote the exchange of information among organisations concerned with epilepsy
- To bring together, from all sources and countries, information about social and medical care for people with epilepsy and to disseminate such information throughout the world in whatever manner seems most appropriate
- To represent epilepsy in relation to national and international organisations concerned with human welfare
- To encourage education and training with respect to all aspects of epilepsy
- To stimulate research into the social aspects of epilepsy
- To co-operate in accomplishing all the above mentioned objectives with the International League against Epilepsy
IBE has a vision of the world where everywhere ignorance and fear about epilepsy are replaced by understanding and care.
IBE exists to improve the social condition and quality of life of people with epilepsy and those who care for them.
To achieve its vision and mission, IBE has set the following Goals:
Organisation: To provide an international umbrella organisation for national epilepsy organisations (IBE Chapters) whose primary purpose is to improve the social condition and quality of life of people with epilepsy and those who care for them.
Support: To provide a strong global network to support the development of new Chapters, to support existing Chapters to develop to their fullest potential and to encourage co-operation and contact between Chapters.
Communication: To promote the facts about epilepsy and to communicate IBE’s vision, mission and messages to the widest possible audience.
Education: To increase understanding and knowledge of epilepsy.
Representation: To provide an international and global platform for the representation of epilepsy.
In order to accomplish its objectives of organisation, support, communication, education and representation, IBE:
- Promotes, stimulate and assists in the formation and continued development of organisations of people with epilepsy and those who care for them in all countries.
- Encourages relevant epilepsy organisations to become an IBE Chapter.
- Publish information about epilepsy and about the IBE, which is disseminated as widely as possible, by way of newsletters, reports and surveys and electronic means.
- Promote the exchange of information and co-operation between organisations concerned with epilepsy.
- Stimulates research into epilepsy.
- Encourages education and training with respect to epilepsy through the introduction of projects and initiatives.
- Creates programs to support Chapters s in developing nations, in order to support their efforts to improve the quality of life of persons with epilepsy in their country.
- Organises and facilitates international and regional conferences, congresses, meetings and seminars on epilepsy.
- Works in collaboration with the International League Against Epilepsy on a number of activities including the Global Campaign Against Epilepsy and congresses.
- Works closely with other bodies and organizations, such as the World Health Organization, with which IBE has been in official working relations for many years; as a member in Special Consultative Status on the Economic and Social Council of the United Nations (ECOSOC); and as a member of CoNGO – the Conference of Non-Governmental Organisations.
IBE Constitution and Bye-laws
The International Bureau for Epilepsy was founded in Rome in 1961 and its first Constitution was adopted on 15th September 1966. Amendments were made to the Constitution in 1978, 1985, 1993, 1997 and 1999.
The current Constitution, adopted in January 2005, is the result of a major review of the previous Constitution, which was carried out by the IBE Constitutional Review Task Force during 2003/2004 and approved by ballot by the IBE General Assembly in December 2004.
The latest amendment to the Constitution, to allow the introduction of a new class of member, Regional Membership, was ratified by the General Assembly on 1st July 2009.
Click here to download the IBE Constitution
Click here to download the IBE Bye Laws
Partnership Guidelines on working with the pharmaceutical industry
Relationship with pharmaceutical companies
- The International Bureau for Epilepsy (IBE) is a Non-Govermental Body (NGO).
- Relationships between non-governmental organisations (NGOs) and pharmaceutical companies should be based on equal partnership. Both sides must work together on policy development and practical initiatives, in the interests of the patients and their carers whom the NGO represents, while preserving its independence.
- Each party should remember that successful partnerships are those where both partners gain something, and each should make efforts to understand the internal culture of the other.
- NGOs should recognise that pharmaceutical companies need to be profitable, and have their own particular marketing agenda, to which no NGO should ever feel obliged to conform. Funding should be rejected if the alternative is compromising the NGO’s independence in any way.
- The International Bureau for Epilepsy (IBE) encourages the use of available funding so long as the NGO’s independence is not compromised in any way and so long as the relationship is totally transparent. Contracts between the parties help in this respect.
- IBE is opposed to relationships designed to give one company competitive advantage over another and, where possible, prefers the use of funding consortia composed of two or more companies from the same industry.
- Joint research initiatives must ensure that independence is not eroded.
- IBE accepts funding from the pharmaceutical industry or private companies when:
- it believes it will result in benefit to IBE;
- the Board is satisfied that accepting the funds will not attract adverse publicity;
- the funder does not try to coerce or over-influence IBE’s policy or actions, either explicitly or implicitly
- A NGO’S good name is its most valuable asset. IBE’s name must not be used to imply approval or endorsement of any of the donor’s products or policies, without the Board’s prior written approval.
- IBE does not endorse any individual treatment; people living with epilepsy need the widest possible range of treatment options. These may include surgery, complementary therapies, neurostimulation, dietary therapies, lifestyle changes, and non-pharmaceutical products and other therapies;
- IBE encourages active partnership between patient, carer and health professional, as well as discussion of all available options to promote informed choice by the patient;
- IBE supports the proper licensing of medicines and believes that the marketing of non-drug treatments to the public requires similar rules and standards.