News

IBE is pleased to learn that the EU Citizens Initiative – Stop Vivisection, which was submitted to the European Commission (EC) in early March, with an aim to repeal the existing European Directive (2010/63/EU) on the protection of animals used for scientific purpose, and presenting “a new proposal that does away with animal experimentation”, has not been successful. In recent weeks, IBE and the International League Against Epilepsy had been actively involved in bringing to the notice of policy makers in Brussels the implications that would arise should animal vivisection for medical research be halted. Last week, on Wednesday 27th May, the Commission announced its response to the Stop Vivisection initiative in which it states that the Commissions ‘does not intend to submit a proposal to repeal Directive 2010/63/EU and is not intending to propose the adoption of a new legislative framework’. The response also states that the EC recognises the need for further advancement of scientific before alternatives can be developed for all areas where testing still occurs and adds that: “The EU Commission will continue to promote the development and implementation of alternative approaches, encourage cooperation and knowledge sharing across sectors, validate new methods and facilitate their regulatory approval.” [...]

Children with epilepsy – families tell their stories” are four films recently published by The Norwegian Epilepsy Association. The films are made by Elisabeth Aspelin og Halvor Nittteberg. They are film producers and parents to a young boy with epilepsy. Elisabeth and Halvor have produced the films they wished existed when their own son got epilepsy. They hope the films will be an inspiration to families living with epilepsy, and that they give insight to how families manage their everyday life without being controlled of fear of seizures.

The ILAE and IBE Executive Committees, the AES-ILAE Translational Research Task Force, and the Neurobiology Commission of the ILAE have sent a letter of response to the members of the European Parliament to oppose the March 3rd, 2015, European Citizens Initiative Stop Vivisection. This initiative, which requests the phasing out of animal experimentation in biomedical research in Europe, is expected to be discussed and voted on in the parliament in the next couple of months. The position of the ILAE-IBE is that this initiative is deleterious for the future of biomedical research. IBE Members in the European Region are being urged, therefore, to contact their national Members of the European Parliament asking them to oppose this Citizens Initiative. Read the IBE-ILAE position paper CLICK HERE

UCB leads epilepsy hackathon to support patient needs through digital tools and services On 24-26th April, 2015, developers, designers and epilepsy experts (doctors and patients) will come together at two simultaneous hackathons in Brussels, Belgium and Atlanta, US.   The Goal To build innovative new digital tools for people with epilepsy and their caregivers. “Epilepsy affects millions of people all over the world. At UCB, we want to support patients, their families and caregivers, with digital solutions that can connect them to valuable sources of knowledge and experience that can make a meaningful difference to their day-to-day living,” said Erik Janssen, Vice President Global Patient Solutions Epilepsy, UCB. “Hackathons are rapidly establishing themselves as a fast, effective way to develop innovative digital healthcare solutions. Creative, highly skilled online developers and designers relish the challenge of coming up with practical, workable prototypes that can be of real value to people with a severe disease such as epilepsy.” At the Hackathon, digital experts will join forces with epilepsy specialists and patients to build  prototype digital tools aimed at supporting people living with epilepsy. Participants will face four broad challenges including accessing effective support and reliable information, empowering people to talk about their epilepsy, [...]

Next week, in the United Kingdom, MPs are due to hold a three-hour debate on epilepsy in the House of Commons. This debate will take place at 14:00 (GMT) on Thursday 26 February and our friends and colleagues in the UK are urging everyone with epilepsy to lobby their MP to ask them to attend the debate. The debate is expected to cover issues such as: Standards of healthcare for people with epilepsy A lack of specialist doctors and nurses Access to the best treatment Stigma and the social aspects of living with epilepsy Challenges with education The three hour debate was secured by the All Party Parliamentary Group on Epilepsy, led by MPs Laura Sandys, who herself has epilepsy. You can email or write to your local MP and two of our associations have templates available to assist you in doing this. Epilepsy Society: Letter Template CLICK HERE Epilepsy Action UK : Email Template CLICK HERE  

Left to Right: Athanosis Covanis (IBE President), Shekhar Saxena and Tarun Dua, WHO, Emilo Perucca (ILAE President) A total of 28 countries presented statements in support of the resolution; 20 of these were members of the WHO Executive Board. The Executive Board of the World Health Organization (WHO/OMS) unanimously approved a resolution in support of improving epilepsy care and research at its Executive Board Meeting on Monday 2nd February 2015. The resolution – Global burden of epilepsy and the need for coordinated action at the country level to address its health, social and public knowledge implications – was formally sponsored by People's Republic of China, Russian Federation, Maldives, Argentina, Islamic Republic of Iran, Japan and Panama. A total of 28 countries presented statements in support of the resolution; 20 of these were members of the WHO Executive Board. The next step in the process will take place in May when the resolution will be presented at the WHO General Assembly in Geneva in May for final approval. Once approved it will become formal policy of the WHO so that the fight against epilepsy becomes a global effort. Please help us in making sure that this resolution succeeds by encouraging [...]

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 [...]

www.epilepsy.org IBE and ILAE are delighted to announce that the new website for International Epilepsy Day is launched. Events are taking place around the world to mark the first International Epilepsy Day. Visit the site to see just some of the events and activities that are taking place on 9th February 2015 VISIT THE WEBSITE - CLICK HERE Social Media - How YOU can help! Social media will play a huge role worldwide in getting the epilepsy awareness message out to the public. On February 9th there will be a worldwide effort to get #epilepsyday to trend on twitter and other social media sites. We're looking for all social media users to post a photo on the day using a sheet of paper to display the hashtag and your location. If you don't use social media, you can send us your photos and we will post them for you! Be part of the worldwide social media effort. We need you to get active on social media! Change your cover photo and profile picture to the International Epilepsy Day logo available on the download page Please share content and promote International Epilepsy Day using the hashtag #epilepsyday Take a "selfie" in a famous location in your country with #epilepsyday card. [...]