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Working together to understand & prevent epilepsy mortality

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Working together to understand & prevent epilepsy mortality

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Working together to understand & prevent epilepsy mortality

Our Mission

PAME’s mission is to convene, educate and inspire all stakeholders – from the bereaved to those living with epilepsy, to health care professionals, advocates, clinical and basic scientists, and death investigators – to promote understanding and drive prevention of epilepsy-related mortality.

Prevention Toolkit

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 the Preventing Epilepsy Deaths: Clinician Toolkit. Watch our recent webinar and access the toolkit through the link below.

View Webinar and Toolkit


Mortality Issues

People with epilepsy are 3 times more likely to die prematurely than people without epilepsy. Many of these deaths could be prevented. Learn more about the leading causes.

Resources

PAME’s resource hub seeks to centralize updated information and link to partner organizations for specific content. Search here for non-profit partner resources, practice guidelines, educational materials, bereavement resources, publications, funding opportunities and more.

Recent News

Explore recent publications, news and updates.

Epilepsy Mortality: The Unseen and Unknown

01/18/2022 | Neurology | Orrin Devinsky

In this issue of Neurology®, Klovegard et al.1 examine epilepsy mortality using a wide-angle lens, looking beyond sudden unexpected death in epilepsy (SUDEP) to other direct and indirect causes of epilepsy-related deaths. They found that most deaths in children and adults <50 years old were directly or indirectly related to epilepsy. Thus, epilepsy may be the leading...

All News

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