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EMBARGO 21 JULY9.00 a.m.CET 22 July: World Brain Day 2015 devoted to epilepsy “Epilepsy is more than seizures” – Global awareness-raising for the underestimated burden of epilepsy – 75-80 percent of people with epilepsy in low income countries do not have access to medication “Epilepsy is more than seizures” is the motto of this year’s World Brain Day. This awareness campaign initiated by the World Federation of Neurology (WFN) and staged all over the world every year on 22 July is dedicated to bringing more attention to the importance of brain health and the prevention of brain diseases. This year, the WFN’s awareness efforts are supported also by the International Bureau for Epilepsy, the International League Against Epilepsy and the World Health Organization. More than 50 million people worldwide live with epilepsy, but diagnostic and therapeutic resources are unequally distributed globally.   London, July 2015 – “Epilepsy is one of the most common chronic neurological diseases. It is estimated to affect more than 50 million people around the world, and about 2.4 million people are newly diagnosed every year”, according to Dr Raad Shakir, President of the World Federation of Neurology (WFN). “However, there is a lack of awareness in the [...]

IBE is pleased to announce that Ann Little, IBE Executive Director, has been elected as President of the European Federation of Neurological Associations for the two-year term 2015-2017. The election took place at the General Assembly of EFNA, held during the 1st Congress of the European Academy of Neurology (EAN) in Berlin. EFNA is a network of neurological patient advocacy groups, focused on the field of neurology whose mission is to influence policy makers and legislators, particularly in European Member countries but also across the continent of Europe. Ann Little, IBE Executive Director, newly elected President of EFNA In line with IBE’s own mission, EFNA aims to encourage the implementation of the necessary resource priorities in order to reduce stigma and improve the quality of lives of people with a neurological disorder. Whilst remaining independent, EFNA also co-operates with the EAN and other agencies working in the field. Members of EFNA include European Multiple Sclerosis Platform, European Headache Alliance, Motor Neurone Disease Association, and Stroke Alliance Europe, as well as associations representing rare neurological disorders including International Huntington Association, Dystonia Europe, euro-ATAXIA and European Alliance for Restless Legs Syndrome.

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  

[table id=72 /] 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 [...]