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Mohammad Agus Rahmatulloh, Indonesia – IBE Golden Light Award Winner 2019
Hello my name is Mohammad Agus Rohmatulloh. I have epilepsy, I have a physical disability and I have difficulty in speaking, but this has not stopped me from advocating for a better understanding of epilepsy in families, in communities and beyond. My parents describe me as [...]
Emma Lovise Larsen, Norway – IBE Golden Light Award Winner 2019
Who am I We all have a choice in how we tell our own story. You can tell it like they do in novels or romantic flicks, where everything is so dramatic or just very superficial. However, we all know that those movies are hardly ever [...]
Elizabeth Dueweke, USA – IBE Golden Light Award Winner 2019
Searching for the Right Story By Elizabeth B. Dueweke At 18, my future felt certain. I was going to study at Smith College and become a journalist. I loved to meet people and tell their stories. I knew it wouldn’t be easy, but I was ready [...]
Amirsoheil Pirayeshfar, Iran – IBE Golden Light Award Winner 2019
Amirsoheyl Pirayeshfar Amirsoheyl Pirayeshfar has had a very successful career in the field of polymer science specialising in nano biotechnology. Perhaps it is not too surprising that Amirsoheyl chose this profession as his father was a chemistry professor and his mother was a senior nursing supervisor [...]
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.
