Support for Bereaved
View photos of the 2023 Remembrance Wall at the Walk to END EPILEPSY® in Washington D.C.
The Epilepsy Foundation SUDEP program would like to express our deepest condolences to you and your family during this time. We understand this is a confusing and tragic time for you and we want to help. At the SUDEP program, you are not alone.
Our Services For Families Include:
- Accurate information regarding SUDEP and other causes epilepsy related deaths.
- Individual or family support from a bereavement support facilitator who is also a mother who lost her daughter to SUDEP.
- Online bereavement support groups are designed to help families and individuals connect with others who have lost a loved one to epilepsy in a safe and confidential environment. We offer an Adult Support Group and a Young Adult Support Group. If you’d like more information about these groups, please email sudep@efa.org.
- We encourage you and your family to share your story with other members of the community who have lost a loved one. You can share your story through our eJourney blog.
- Advocacy, as needed on a case-by-case basis, which includes coordination and assistance with the death investigation process.
- Access and assistance in enrolling and participating in SUDEP-related research opportunities.
Call 800-332-1000 and press 1 or email sudep@efa.org to learn more about our services.
In addition to supporting families bereaved by epilepsy, the SUDEP program leads education and awareness efforts targeted to people living with epilepsy and their caregivers as well as medical professionals, including members of the death investigation team. We also drive and support research into the causes and prevention of SUDEP. Learn more about these programs and how you can become involved.
Additional Resources For Support After The Loss Of A Loved One:
SUDEP Specific Support:
National Support Organizations
Local Support Services:
Contact your local Epilepsy Foundation for more information and community resources.
Additionally, many religious institutions, hospitals, mental health agencies and hospice organizations offer local bereavement services.
Resources
Epilepsy Centers
Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.
Epilepsy Medication
Find in-depth information on anti-seizure medications so you know what to ask your doctor.
Epilepsy and Seizures 24/7 Helpline
Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.
Tools & Resources
Get information, tips, and more to help you manage your epilepsy.