SUDEP Action

Making every epilepsy death count
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Epilepsy Bereaved to SUDEP Action

In 2013 Epilepsy Bereaved changed its working name to SUDEP Action.  We started our Sudden Unexpected Death in Epilepsy (SUDEP) campaign in 1992.  We got the UK newspapers to break the SUDEP story before SUDEP was known; worked with researchers to define it and took action.  In 1992 very few people in the world believed SUDEP existed. In 2013 medical and advocacy organisations have recognised the change that has happened across the world as a result of the work of Epilepsy Bereaved.  The world is a very different place today, but not as different as it needs to be for the bereaved families that make contact with SUDEP Action every day.  There remains an urgent need for action on SUDEP and indeed all epilepsy deaths.

Breaking the SUDEP taboo - from 1992






Grabbing International attention on SUDEP - from 1995







A wake up call to the world - from 2002







The SUDEP Global Conversation – from 2003







Epilepsy Bereaved to SUDEP Action – what’s in a name?