65 MILLION people around the world live with epilepsy

International Epilepsy Day will launch around the world on Monday 9 February 2015. Organised by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), International Epilepsy Day will provide the platform for people with epilepsy to share their experiences and stories with a global audience and thereby to build a stronger epilepsy community. Developed in line with a strategy to advocate for appropriate legislation to guarantee human rights of people with epilepsy and to empower people with epilepsy to maximise their quality of life, International Epilepsy Day aims to highlight that:

  • epilepsy still remains a hidden disease due to the stigma attached;
  • it is treatable, yet 40% of people living with epilepsy in wealthier countries do not receive appropriate treatment. Over 70% of those living in low income countries cannot even access epilepsy medication regularly;
  • lack of treatment imposes a huge financial burden on national health systems;
  • research and legislation remain key issues in improving the quality of life of persons with epilepsy.

Around the world, IBE and ILAE associations are holding events to highlight issues of particular relevance at national or regional level, while, internationally a series of activities using the hashtag #epilepsyday will provide global outreach, uniting the voices of IBE and ILAE associations in the more than 125 countries in which the organisations are represented around the world:

#epilepsyday on Facebook, Twitter and Instagram.

#epilepsyday in photos: Around the world people with epilepsy will use smartphones to catch the mood of the day on #epilepsyday message cards in landmark locations.

With membership stretching from New Zealand to the US, this will be a major activity! epilepsy.org is a key repository for information on International Epilepsy Day. In the European Parliament an exhibition tells the stories of people with epilepsy from around the world; official launch by Carlos Moedas, EU Commissioner for Research, Science and Innovation and hosted by Brian Hayes MEP, on 10 February.

Athanasios Covanis, IBE President, said “International Epilepsy Day is the opportunity to lend a global voice to people with epilepsy, a disease that can have devastating consequences, affecting all aspects of the lives of people with epilepsy. These are our most powerful advocates, and some of their stories, showing bravery in the face of advertisy, are showcased on epilepsy.org, demonstrating clearly that epilepsy is much more than seizures.”

Emilio Perucca, ILAE President, added “International Epilepsy Day is a major step forward in raising awareness and improving the lives of people with epilepsy throughout the world. Its establishment is synergic with the approval, on 2 February, of the first WHO resolution on epilepsy by the WHO Executive Board in Geneva. The resolution, a true milestone, calls for a coordinated action in all member States to improve epilepsy care, protect the civil rights of people with epilepsy and increase investment into epilepsy research”