SUDEP Action

Making every epilepsy death count

New report: Disorganised A&E system isn't working

SUDEP Action is calling for a national release of funding for local systems – prioritising epilepsy as a health inequality – following this week’s shocking NCEPOD report into A&E care for those with epilepsy.

Handmade hearts by local group for Purple Day

SUDEP Action is sending 650 homemade purple hearts to the House of Commons - one for every MP - ahead of Purple Day on Sunday 26th March.

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.

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.

Research into epilepsy deaths and SUDEP is 'number 1 priority'

Establishing the ‘causes and contributing factors of epilepsy-related deaths, including SUDEP – and how these deaths can be prevented’ – is the number one priority for epilepsy research, according to a new study announced today.

'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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