Welcome to the Rare Epilepsy Network.


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:

The REN closed to new enrollments and survey completion in September 2018. It will re-open under the Epilepsy Foundation sometime in 2019.

Where We Are

have enrolled in the REN