Founded in 1995 as Epilepsy Bereaved, today SUDEP Action is the only UK charity with specialist expertise in supporting and working alongside anyone bereaved by epilepsy.
The free support service is tailored - led by what the bereaved need and want. Services include ongoing emotional support, counselling, advocacy, information, advice, and involvement in research through The Epilepsy Death Register.
At least 21 people in the UK die each week from epilepsy, and nearly half of these are potentially avoidable with better risk awareness and access to services. Epilepsy deaths can be devastating and traumatic and can leave many unanswered questions.
SUDEP Action work to prevent epilepsy deaths and promote better awareness of epilepsy risks, information and services. Free award-winning safety tools and resources are provided to clinicians, people with epilepsy and their families. Including EpSMon, a free self-monitoring digital app for epilepsy patients, and the SUDEP & Seizure Safety Checklist, a clinical tool supporting epilepsy risk management and discussions. The charity also collaborates with UK and international research teams, focusing on finding the answers to help save lives.