Rare Epilepsy Network (REN)

See the REN dashboard* and make data requests!

The REN interactive dashboard reflects some of the patient and caregiver data collected between 2014 and 2018 from 1,459 participants.

*This website works best when used with Google Chrome as your browser.

You Are Not Alone

Boy and mother on swing

Of the 65 million people living with epilepsy worldwide, a significant amount has a rare form of epilepsy.

Though each syndrome/disease/condition is different, people living with rare epilepsies and caregivers share many common seizures, symptoms and side effects. However, because each syndrome population is small in size, research to unlock answers is not moving fast enough.

Rare Epilepsies Unite

To expedite research into the rare epilepsies, 32 rare epilepsy organizations have joined forces with the Epilepsy Foundation, Research Triangle Institute, and Columbia University to create the first ever Rare Epilepsy Network (REN). With seed funding from the Patient-Centered Outcomes Research Institute (PCORI), the REN patient registry collects information about people living with rare epilepsies to better understand these conditions, improve treatments, and improve the lives and quality of care of people living with them.

  • A registry gathers and keeps information about people with a certain condition to support and encourage research into that condition.
  • The information people provide is stored in a secure database; information is given to researchers without names or identifying information of participants.
Boy playing music

Want More Information?

Are you a researcher?

Download, complete and return this form to request REN data

Contact the Epilepsy Foundation

You may also contact Epilepsy Foundation at:

Reviewed By: 
Epilepsy Foundation Research
Wednesday, March 4, 2020