SUDEP Action

Making every epilepsy death count

Online Epilepsy Memorial Day 2023

Many bereaved people, from all over the world, will join together to share photos, poems and memories of their loved ones, who have lost their lives to epilepsy.

Women left in dark over pregnancy and SUDEP risks

New research published in the Seizure Journal shows women are vulnerable to dying prematurely because they are living with higher risks / unaware of the risks they may be facing because of their epilepsy.

Untold Distress – the impact of Covid19 on the epilepsy bereaved

New research led by SUDEP Action has found that bereaved people experienced an increased intensity of grief symptoms during the pandemic, when lockdown measures were in place.

‘We want to do something special to remember Alan'

Over the weekend of April 29-30, Kate Fisher, husband Scott and sons Tom and Ben, will be cycling from London - Winchester - Bristol as a tribute to Kate's brother Alan who died of SUDEP. Alan would have been 60 on May 8 this year.

What is SUDEP?

Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely and no reason for death is found.

We invite you to share your story

Your experience has the power to make an impact and help SUDEP Action to break down barriers for change. Contact us to learn more.

'The term SUDEP just has to be better known'

Lynn’s daughter Samantha died of SUDEP in 2009. Here, Lynn shares her story – and why she believes people with epilepsy need to understand what SUDEP is.

I want information

I want help

I want to get involved

I want to get involved

I want to report a death

Welcome to SUDEP Action

There are at least three epilepsy-related deaths a day in the UK.

SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. We are the only UK charity specialised in supporting and involving people bereaved by epilepsy.

Our services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involvement of bereaved families and professionals in research through the Epilepsy Deaths Register. If you have been affected by an epilepsy death, please contact our support team on 01235 772852.

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