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The European Forum on Epilepsy Research took place in Dublin on 25th–27th May 2013. It was designed to provide a platform on how to improve the lives of persons with epilepsy in Europe by influencing the political agenda of the European Union for the coming years. Central to this, was the opportunity to advance epilepsy on Horizon 2020 (the 8th Research Framework Programme of the European Commission), which will run from 2014 to 2020.

The forum's focus was to listen to citizens of Europe who deal with epilepsy-related issues as patients or health care providers; to define objectives and milestones for the epilepsy community; and to propose methods to strengthen epilepsy research and reduce the treatment gap, and the burden and stigma of epilepsy.

The Forum, an initiative of Epilepsy Advocacy Europe (EAE), a collaborative joint task force of the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), which was opened by Gay Mitchell MEP, President of the European Parliament Epilepsy Advocates Group, was cofunded by the European Commission's 7th Research Framework Programme (2007–2013) and hosted in conjunction with the Irish Presidency of the Council of the European Union (EU).

Altogether 270 participants from 57 countries, including each of the 27 EU Member States, were represented at the Forum.

Over the last 3 years there have been several significant developments in promoting greater funding and awareness of epilepsy initiatives in Europe. Most notably, the Written Declaration on Epilepsy was passed by a very large majority of the Members of the European Parliament (MEPs). EAE, chaired by Gay Mitchell MEP and established in 2009, has now more than 30 active Members and has played a major indirect role in the European Commission's recent 7th Research Framework call for funding for epilepsy-related research projects to the amount of up to €36 million.

To build on these achievements, the Forum agreed on the necessity in maintaining current initiatives at European level in order to keep epilepsy high on the European agenda.

Research

  1. Top of page
  2. Research
  3. Access to Epilepsy Care
  4. Burden and Stigma of Epilepsy
  5. Political Commitment
  6. Moving Forward
  7. Disclosure

A clear message was delivered to politicians and to policy makers that there is a need for further funding in epilepsy research within Horizon 2020. The following topics were specifically discussed, as necessitating extra resources:

  1. Epilepsy in the Developing Brain.
  2. New Targets for Innovative Diagnostics and Treatment of Epilepsy.
  3. What is required for Prevention and Cure of Epilepsy?
  4. Epilepsy and Co-morbidities – Special Focus on Ageing and Mental Health.

Access to Epilepsy Care

  1. Top of page
  2. Research
  3. Access to Epilepsy Care
  4. Burden and Stigma of Epilepsy
  5. Political Commitment
  6. Moving Forward
  7. Disclosure

Dr. Christian Elger, University of Bonn, Germany, noted that there are on average 6,000 epilepsy patients per million population and one third of those are difficult to treat or untreatable. Furthermore, the density of neurologists across Europe is highly variable. Dr. Elger outlined the need for specialized epilepsy centers to provide services for 2–3 million inhabitants (4,000–6,000 patients). There was consensus that this course of action is highly desirable and requires support from politicians and decision makers at national and EU level.

Burden and Stigma of Epilepsy

  1. Top of page
  2. Research
  3. Access to Epilepsy Care
  4. Burden and Stigma of Epilepsy
  5. Political Commitment
  6. Moving Forward
  7. Disclosure

Possibilities were explored as to how the social burden associated with epilepsy could be reduced through targeted initiatives at EU, national and regional levels. In particular, the need for a European-wide epilepsy awareness campaign, supported by the European Commission, was stressed. The annual European Epilepsy Day, hosted on the second Monday in February for the last 3 years in the European Parliament, has been a major success, and its continuation is to be encouraged. The European Commission plans to target stigma across all diseases and it is incumbent on the epilepsy community to ensure that they contribute to the debate and participate in the ensuing initiatives.

Political Commitment

  1. Top of page
  2. Research
  3. Access to Epilepsy Care
  4. Burden and Stigma of Epilepsy
  5. Political Commitment
  6. Moving Forward
  7. Disclosure

The Irish Minister for European Affairs, Lucinda Creighton T.D., addressed the Forum with an impassioned speech recognizing the need for greater attention to epilepsy. Her presentation, at a time when Ireland hosts the Presidency of the Council of the EU provided an important recognition from EU leaders of the need for more action in the fight against epilepsy. This message was reinforced by Tonio Borg, EU Commissioner for Health, in a video presentation that demonstrated a spirited commitment to alleviating the burden of the disease.

John Ryan, Acting Director for Public Health in the European Commission's Department of Health, outlined five key areas where the epilepsy community can do more. They are:

  1. Fostering epilepsy patient and carer support.
  2. Training for health professionals.
  3. Ensuring that epilepsy is included in the European Commission's programmes to reduce stigma in all diseases in 2014.
  4. Highlighting the divergence in the treatment and care for epilepsy across Europe.
  5. Assisting in the improvement of public health services in the developing world.

The EAE will be endeavoring to follow up on these five issues with immediate effect.

Moving Forward

  1. Top of page
  2. Research
  3. Access to Epilepsy Care
  4. Burden and Stigma of Epilepsy
  5. Political Commitment
  6. Moving Forward
  7. Disclosure

The Forum played host to a session entitled, “Think Big – Aiming for the Horizon ‘No seizures, No epilepsy.’” Its aim was to bring scientists, patient organizations, the European Commission Research Directorate, the United States' National Institutes of Health/National Institute of Neurological Disorders and Stroke (NIH/NINDS), and industry representatives, including SMEs, to the same table, for the first time. In so doing, it provided them with the opportunity to share their visions on what practical steps should be taken over the next 5 years to achieve the goal No seizures, no epilepsy by 2030.”

Philippe Cupers, Head of Neuroscience at the European Commission's Directorate General for Research and Innovation, outlined that the budget for Horizon 2020 could be in the region of €80 billion and that there are particular opportunities for epilepsy-related projects under the heading “Health, Demographic Change and Well-being.” Dr. Vicky Whittemore, Programme Director, Epilepsy, National Institute of Neurological Disorders and Stroke (NINDS)/National Institutes of Health (NIH), United States, clearly indicated the need for collaborative efforts with European partners and discussed traumatic brain injury research as an example for such activities.

Much has been accomplished; but there is much more yet to be achieved and it is imperative that the current momentum is not lost. The first European Forum on Epilepsy Research, by bringing the whole epilepsy community together around one table, was a tremendous success. It is hoped that its long-term effect will be to encourage all stakeholders into concerted action toward a world in which no person's life is hijacked by epilepsy.

Presentations from the Forum are available on the EAE webpage http://epilepsyadvocacyeurope.org

A sample of the needs arising from the Forum were identified as follows:

  1. Further funding in epilepsy research within Horizon 2020.
  2. Specialized European epilepsy centers to provide services for 2–3 million inhabitants.
  3. Continuation of the annual European Epilepsy Day.
  4. Contribute to the European Commission plans to target stigma across all diseases.
  5. Collaborative efforts with U.S. partners.

Disclosure

  1. Top of page
  2. Research
  3. Access to Epilepsy Care
  4. Burden and Stigma of Epilepsy
  5. Political Commitment
  6. Moving Forward
  7. Disclosure

Neither of the authors has any conflict of interest to disclose. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.