SUDEP Action

Who we are

We are a national charity with global reach and near 3-decades experience of working directly with people bereaved by epilepsy, researchers, policy makers and health professionals. We fight to make epilepsy & bereavement services better, and campaign for policy change that will help end preventable epilepsy deaths, including SUDEP (Sudden Unexpected death in Epilepsy).

We are the only charity who provide a dedicated expert epilepsy bereavement support service to people who have experienced an epilepsy death. Our bereavement services are unique and world-renowned, providing free telephone support, involvement in research, counselling and advice/guidance through inquests and investigations.

We are responsible for getting SUDEP recognised by epilepsy organisations, the medical profession and Government. We want to see a future where all health professionals, people with epilepsy & their families know that epilepsy comes with risks, but that for many people, positive actions can be taken to reduce them. This information can prevent deaths and help people with epilepsy to live safer lives.

Research into epilepsy deaths is often overlooked for major funding - however at SUDEP Action, we prioritise this.  We support and fund research that supports change ‘on the ground’. Our 3 main research projects are the SUDEP and Seizure Safety Checklist, our EpSMon app and the Epilepsy Deaths Register.