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Epilepsy mortality gets top billing at international congress

The Epilepsy World Congress 2011 held in Rome attracted some 4,000 delegates and the topic of the Presidential Symposium opening the conference was epilepsy mortality

Jane Hanna OBE, Director of Epilepsy Bereaved said: “After years of campaigning it was an emotional moment when presenter after presenter at the Epilepsy World Congress 2011 made the case that it was time for preventative action on epilepsy deaths. The Founders of Epilepsy Bereaved remember the struggle in the 1990’s to get epilepsy mortality even mentioned in epilepsy meetings. To see it top of the World Congress agenda reaching an audience of 4,000 felt like a real landmark”.

The work of Epilepsy Bereaved was praised by the President of the International Bureau and the UK experience presented as evidence of how better awareness of Sudden Unexpected Death in Epilepsy (SUDEP) can be achieved and how change can happen. 

Jane Hanna also presented on SUDEP: The Facts at a parallel session on SUDEP alongside a panel of leading international researchers.  As part of the International Bureau for Epilepsy (IBE) golden jubilee celebrations, the IBE sponsored the launch of SUDEP – continuing the global conversation.  It is important that the direction of new research and change to prevent deaths is well informed and that the public can easily understand these developments as SUDEP awareness grows.

Epilepsy Bereaved is at the heart of this vital work and Sudden Unexpected Death in Epilepsy: continuing the global conversation, our new book with partners Epilepsy Australia and SUDEP Aware (Canada) is aimed at reaching everyone who is interested in prevention of deaths.  Professor Leone Ridsdale, a delegate at the conference read it and shared it with her daughter: “ I read your book, and so did my daughter who is not a doctor. We both think it is excellent. The mix of science with moving stories is unusually powerful and grabbed our attention. Congratulations to everyone”.  Professor Leone Ridsdale, Professor of Neurology and General Practice, Kings College, London