About SUDEP Action

SUDEP Action campaigns to raise awareness of epilepsy risks and strives to prevent epilepsy deaths, including those due to SUDEP (Sudden Unexpected Death in Epilepsy). We are the only UK charity dedicated to supporting and working alongside families bereaved by epilepsy.

With 21 epilepsy deaths weekly in the UK, where at least 42% are potentially preventable, we provide free services to help keep people with epilepsy safe; including award-winning risk tools, information and resources. We also provide the only free specialist epilepsy bereavement support services, which includes counselling and support with inquests.

SUDEP Action collaborates with UK and international research teams – striving for answers that will save lives.

Epilepsy is one of the top-ten causes of early death.  Sudden Unexpected Death in Epilepsy or SUDEP can often be traumatic for families and distressing for professionals, all of whom have questions.

 At SUDEP Action, we focus our efforts on the priorities that bereaved families tell us are important:

  • – To prevent deaths
  • – To be supported
  • – To be involved

 We have won national and international honours for our achievements to date, but we recognise there is much more work to do.

 There are five key strands to our work:

 Providing information on SUDEP and risk in epileps

 Offering support when someone has did

 Involving people to help effect change

 Sponsoring research and education to prevent future death

 Capturing data across the UK & internationally through the Epilepsy Deaths Register