Welcome to the Rare Epilepsy Network.

The REN baseline survey is now closed, but we will be launching new surveys soon under the Epilepsy Foundation.
If you would like to know when REN enrollment opens again, please click here to leave your contact information.


The Rare Epilepsy Network, or REN for short, is a collaboration between the Epilepsy Foundation, RTI International, Columbia University and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN will establish a registry of these patients which includes patient or caregiver-reported data in order to conduct patient-centered research
. Learn how you can help with this important research. REN includes these organizations:

Where We Are

have enrolled in the REN