Latest News
The effects of COVID-19 – A report from SUDEP Action
The pandemic has brought significant change to the epilepsy and third-sector communities. As a charity specialised in supporting those bereaved by epilepsy, and dedicated to preventing epilepsy deaths, our funding evaporated when UK lockdown hit. Our small team had to quickly develop new ways of meeting [...]
Share your COVID-19 story
Dear Friends, It is now more than six months since the world began to hear about COVID-19 and four months since the first country in Europe, Italy, announced lockdown in its bid to fight the virus. Less than three weeks later, our countries – Scotland and [...]
IBE and ILAE Joint Statement on Racism
Racism robs. It robs people of their aspirations and, far too often, also of their lives. It robs communities of opportunities and growth. And racism robs everyone of talent, innovation and of dignity. For people living with epilepsy racism adds yet another layer of discrimination to [...]
Briefing Document on update of Psychosocial Research
Dear friends, colleagues and members of IBE, As most of you will understand, it is not always possible to keep up to date with psychosocial research in the field of epilepsy. In response to this we propose to provide a regular briefing document to highlight key [...]
Established in 1961, the International Bureau for Epilepsy (IBE) is an international organisation for national epilepsy organisations (IBE chapters) that exists to provide support for a strong global network, encourage the development of new chapters in underserved areas of the world, and to encourage communication and collaboration among all members so as to meet our mission and vision.
Our members are patient/family focused and driven organisations and we work collaboratively with our professional and government partners worldwide.
Our strategic priorities are to ensure that epilepsy is
recognised as a health priority worldwide; that the human and civil rights of people with epilepsy are enhanced and protected wherever they might live; that people with epilepsy are empowered to maximise quality of life; and that research into prevention, treatment, care and consequences of epilepsy are promoted.
We work to achieve these priorities through a range of programs including:
- Public Information and Health Education
- Advocacy
- International Best Practice Exchange
- Helping Build Communities of Care
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What is Epilepsy?
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.
Epilepsy affects almost every aspect in the life of the person diagnosed with the disease. For many people with epilepsy, the stigma attached to the disease is more difficult to deal with than the disease itself.
People with epilepsy have a 3-6 times greater risk of premature death. Many of the deaths from epilepsy could be prevented with appropriate medication and treatment.
