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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. [...]

Innovative Medicines Initiative (IMI) 2 has just launched its 3rd call for proposals. The first topic on the call is titled RADAR: Remote Assessment of Disease and Relapse programme, which is exploring ways to ensure that the healthcare system moves from a ‘diagnose and treat’ stance to a ‘predict and pre-empt’ approach.     The first application will be in CNS and epilepsy is specifically mentioned as follows: Need and opportunity for public-private collaborative research The RADAR programme aims to test if new pre-emptive therapeutic strategies based on remote continuous monitoring are both scientifically feasible and also practically feasible as part of a wider healthcare system. Scientific feasibility will be performed via the individual topics of the RADAR programme to focus on the specifics of different disease areas. The first topic, detailed below, will study the fluctuation of the chronic diseases of depression, multiple sclerosis (MS) and epilepsy using remote monitoring technology to provide a foundation for developing a novel paradigm based on prediction and pre-emption. In the future, we intend to add other diseases to the CNS topic, such as pain and schizophrenia, and also add further topics in other disease areas such as airways disease and diabetes. Research in [...]

The Epilepsy Foundation supports a series of grants and fellowships to advance the understanding of epilepsy that will lead to better treatment, more effective prevention, and ultimately to a cure. Funding is available to researchers at all professional levels including students, junior investigators and established investigators.       The following opportunities are now available for Spring 2015 Epilepsy Foundation - New Therapy Commercialization Grants Program Epilepsy Innovation Seal of Excellence Award Targeted Research Initiative for Morbidity and Mortality For further information, PLEASE CLICK HERE

Do you have an innovative idea to help people with epilepsy and seizures?     Throw it to the sharks! The Epilepsy Foundation is inviting entries that represent the most innovative new ideas in epilepsy treatment and care for its fourth annual Shark Tank Competition. The winner(s) of the 2015 Shark Tank Competition will receive international recognition and compete for awards totaling $200,000 to support the development and commercialization of an important new product, technology or therapeutic concept to help people with epilepsy. The deadline for submitting a Letter of Intent (LOI) is Monday, February 16, 2015. For more information and entry details ... CLICK HERE  The Shark Tank review committee will select as many as six finalists. All finalists will be invited to present their product concepts or candidates at the 2015 Antiepileptic Drug and Device Trials XIII, scheduled from May 13-15, 2015, Turnberry Isle Resort, Aventura, Florida. The winning entry (or entries) will be selected through live voting by conference attendees, and a panel of judges (Sharks) representing physicians and scientists, corporate executives, leading industry investors, people with epilepsy, and advocates. The project(s) deemed to be the most innovative will be announced at the conference, and the winner(s) can [...]

This joint iniativate of the IBE and the ILAE will be a major event celebrated across the globe in the 138 of countries in which IBE and ILAE are represented. With both IBE and ILAE in official working relations with the WHO, and with IBE in Special Consultative Status in the Economic and Social Council (ECOSOC) of the United Nations, this will make International Epilepsy Day the most prestigious epilepsy event in the world. The first International Epilepsy Day will take place on Monday, 9th February 2015. Following on from this, the official day will be the second Monday of February each year. This world day for epilepsy will be a major step in improving epilepsy awareness in every region of the world, and will also highlight the urgent need for increased research into epilepsy. Recognising regional diversity, IBE’s members are grouped within seven regional structures following the WHO regional boundaries: Africa, Eastern Mediterranean, Europe, Latin America, North America, South East Asia and Western Pacific.  IBE currently has 135 members in 104 countries. ILAE  currently has 115 chapters in 127 countries.