helpline 01494 601 400
30 September 2015

Putting epilepsy on the political agenda

As Epilepsy Society's chief executive Angela Geer prepares to meet with MPs and decision makers at the Conservative party conference, a key report has emphasised the need for support from politicians and people in policy across Europe in order to improve the care of people with epilepsy.

 

Angela GeerAngela Geer, right, will be attending the Manchester conference next week with the Society's chair Helen Pernelet. Their aim is to enlist greater political engagement in ensuring that people with epilepsy benefit from ground-breaking advances that are being made in clinical research at Epilepsy Society.

They also hope to drive home the need for fundamental changes  within the NHS that could improve the treatment and lives of people with the condition.

ILAE and IBE report

A special report has been published by the ILAE-IBE Epilepsy Advocacy Europe Task Force, stressing that support from politicians and decision makers across Europe is pivotal to improved quality of epilepsy care throughout all member states.

ILAE is the International League Against Epilepsy and IBE is the International Bureau for Epilepsy. The report, published by the two organisations in Epilepsia, brings together key points in a road map developed by the European Forum on Epilepsy Research with three main goals:

  • to reduce the burden and stigma of epilepsy
  • to improve access to care
  • to outline the research priorities across Europe.

Major research priority areas identified by the forum include understanding epilepsy in the developing brain; identifying new targets for innovative diagnostics and treatments; prevention and cure of epilepsy; and  understanding the relationship between epilepsy and other conditions with special focus on aging and mental health.

The forum also highlighted the importance of  funding in epilepsy research through the European Horizon 2020 funding programme, the biggest ever EU Research and Innovation Programme running throughout Europe from 2014-2020.

Personalised medicines for epilepsy

Commenting on the report Angela Geer said: 'At Epilepsy Society, our director of clinical genetics Professor Sanjay Sisodiay is one of the leads of a major European Consortium project, EpiPGX, that is looking to contribute to a personalised medicines strategy for people with epilepsy. This is part of the EU 7th framework programme.

'At the moment epilepsy treatment is very much trial and error with many people trying a cocktail of drugs at different doses before they find the one that gives them best seizure control and minimum side effects.

'Our goal, through personalised medicines, is that every individual with epilepsy should have the right medication at the right dose from the point of diagnosis. This is what we hope to achieve through genomic medicine.

'EpiPGX brings together clinical researchers, geneticists and computational biologists from centres across Europe  to link genomics and patient outcomes for people with epilepsy.

'One third of people with epilepsy do not respond to epilepsy drugs. EpiPGX is trying to unravel the interaction of drugs and genetics so as to understand why only some people can be treated successfully.

'This is vital work that could really make a difference to the lives of people we support. There is a real need for the epilepsy community to engage with politicians across Europe to drive this work forward. We see next week's conference in Manchester as a key opportunity to engage with many of our home politicians.'

 

On 14 October, EpiPGX's key investigators, including Epilepsy Society's director of clinical genetics, Professor Sanjay Sisodiya, will be presenting their latest findings and research at the Institute of Education, University College London.
The symposium is free though places are limited. Reserve your place online.