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Preventing Epilepsy Deaths Toolkit

Epilepsy is a neurological disease that doubles or triples the risk of a person dying prematurely. Important causes of death among people with epilepsy include injuries, status epilepticus, and SUDEP, some of which may be preventable with access to high-quality specialty health care and compliance with effective treatment plans.

In 2022, the Child Neurology Foundation convened a group of people with lived experience and experts in the epilepsy community from the US, Canada, and the UK to collaboratively create this toolkit, which over 50 people and 18 epilepsy organizations have endorsed.  The goal of the behavior change toolkit is to educate clinicians on how to talk with families and people living with epilepsy about addressing epilepsy mortality risk factors.

Within this toolkit, there is a handout specifically for caregivers and family members with helpful information about steps to decrease your risk. We encourage you to take a look at it and learn more here.

Epilepsy Alliance America is proud to have been one of the 18 epilepsy organizations involved in the creation of this toolkit.





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