Static overlay

Working together to understand & prevent epilepsy mortality

Static overlay

Working together to understand & prevent epilepsy mortality

Static overlay

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.

Upcoming Events & Webinars

Assess, Act & Empower: A NEW Toolkit to Save Lives

03/28/2023 | 1:00 pm EST - 2:00 pm EST

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. 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. Join PAME for this free 60-minute webinar to learn how this new resource can improve provider and patient communication and reduce the risk of premature epilepsy mortality. Moderated by Tom Stanton, Danny Did Foundation Speakers: -Dr Shawna Benard, University of Southern California -Dr Daniel Freedman, Dell Medical School -Cyndi Wright, Child Neurology Foundation

View Events & Webinars

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.


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

Stay In Touch

JOIN the PAME community! Sign up to receive updates and information on events.

Do you conduct epilepsy research as part of your job?
Have you lost a loved one to epilepsy?
This field is for validation purposes and should be left unchanged.