- The guideline sends the critical message that anyone who suffers generalized tonic-clonic seizures is at risk for SUDEP.
- They also encourage providers to have an open and honest conversation with their patients about SUDEP.
The following advocacy organizations have come together to share their hope that these recommendations lead to increased disclosure rates and better standards of care. Collectively, we also believe more needs to be done to advance our understanding of SUDEP and its prevention.
- Danny Did Foundation
- Citizens United for Research in Epilepsy (CURE)
- Epilepsy Foundation
- North American SUDEP Registry (NASR)
- Autism Speaks
- FACES (Finding A Cure for Epilepsy and Seizures)
- Tuberous Sclerosis Alliance
- DUP15q Alliance
- Dravet Syndrome Foundation
- Autism Science Foundation
- SUDEP Action
Read the advocate's statement:
The Epilepsy Foundation is in the process of adding new content to epilepsy.com to help the community fully understand the guideline and its recommendations to reduce risk. Sign up for our e-newsletter and watch our Facebook and Twitter for further updates.
If you have any questions, reach out to your health care provider and start the conversation. You can also give our 24/7 Helpline a call at 800-332-1000.
When people with epilepsy and their caregivers are empowered with information to understand SUDEP, they can take action to reduce risk of harm. To respond to this urgency, raise awareness, and promote steps that can help prevent SUDEP, the Epilepsy Foundation’s SUDEP Institute issued an Epilepsy.com Special Report, "#AimForZero: Striving Toward a Future Free from Sudden Unexpected Death in Epilepsy."
#AimForZero encourages people with epilepsy to adopt four critical actions to reduce their risk of SUDEP:
Find social media messages to help raise awareness, resources for professionals, and more information on #AimForZero here.