SUDEP Action

Making every epilepsy death count
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SUDEP-The Global Conversation

We hope that you will find value in our knowledge repository about Sudden Unexpected Death in Epilepsy (SUDEP) and epilepsy deaths. We hope you like the new website. If you do, please friend us on the SUDEP Global Conversation Facebook where we will have update notifications in the future as well as on this site.

Major barriers to change need to crumble if science is to make a difference. For this reason, we have divided the Conversation into four main parts sitting alongside stories from families:

•    FACTS is first because there is a substantial body of work that can be used to tackle mortality and help families;
•    QUESTIONS includes vital ongoing research;
•    CHALLENGES is about how we use and communicate the evidence so far;
•    ACTION includes ways that have been developed to do this.

FAMILY STORIES about Sudden Unexpected Death in Epilepsy (SUDEP) can be read across the whole site. These stories are the driving force for most of us in our work; are vital contributions to the conversation and demonstrate a working alliance between families, clinicians and researchers to make change. They have been placed randomly, unless there is a clear match with an article.

The families remain the powerful drivers to tackle epilepsy deaths in many places. You can read Karen Osland’s article in the FACTS section about the impact of all epilepsy-related deaths and find out what families have said can be helpful.