Bereavement Support Resources

This list has been compiled by other bereaved parents,
with resources they found helpful on their journey of loss and grief.

Courageous Parents Network (CPN) is a destination created by parents, for parents, to support, guide and strengthen families as they care for a seriously ill child. At CPN you will find wisdom from fellow parents and pediatric care providers to help you be the best parent you can be to your child. Through Education, Community, and Advocacy, families and providers share the essential elements of understanding, coping, grieving, and healing and offer parents the information, skills, tools, and virtual support they need during their child’s illness journey.

Additional support resources:

SUDEP resources:

Partners Against Mortality in Epilepsy (PAME):  Grief & Death in Epilepsy – Learning from Loss

Mortality in epilepsy is impacted by factors that often are not present in other disease states, including the suddenness of death, and the common scenario where the risk of death was never discussed. This webinar explores grief among those who have lost a loved one to epilepsy, with a focus on the arc of grief over time and what “interventions” were most helpful in the time following death of a loved one.