About SUDEP Action

SUDEP Action exists to prevent epilepsy-related deaths and to support those bereaved from epilepsy.

There are 21 epilepsy-related deaths each week in the UK – at least 42% of these are known to be potentially avoidable. 

SUDEP Action exists to increase awareness of epilepsy risks and tackle all epilepsy deaths, including Sudden Unexpected Death in Epilepsy (SUDEP).  

The only UK charity supporting and working alongside those whose loved ones have died suddenly from an epilepsy related death. Services include bereavement support, counselling and help with understanding the inquest process.

 

The support service is tailored, led by what the bereaved need and want – which can include advocacy, information, advice and involvement in research through The Epilepsy Deaths Register. The support service can also assist and empower families in their interactions with the coronial service and other agencies, this can be combined with ongoing support.

SUDEP Action provide free tools, information and resources are provided to clinicians and people with epilepsy, as well as working in collaboration with UK and international research teams to help prevent epilepsy deaths – striving to get the answers that will save lives.

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 epilepsy
• Offering support when someone has died
• Involving people to help effect change
• Sponsoring research and education to prevent future deaths
• Capturing data across the UK & internationally through the Epilepsy Deaths Register

Learn more about SUDEP Action

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