Rare Epilepsy Network (REN)

See the REN dashboard* and make data requests!

*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.

Download the REN Brochure

Are You Living with a Rare Epilepsy? Join REN Today!

Boy playing music
 

If you or your loved one has been diagnosed with a rare epilepsy, we urge you to enroll in the REN today. Your participation may:

  • Help researchers understand your rare epilepsy
  • Help researchers identify individuals at risk
  • Help others obtain an early diagnosis and avoid delayed or misdiagnosis
  • Find better treatments for your rare epilepsy
  • Unlock the cause and lead to the cure for your rare epilepsy
  • Improve the quality of care for people living with your rare epilepsy

The more people that join the REN, the more information we will have about each rare epilepsy and the faster epilepsy researchers will be able to understand their cause, improve treatments and develop cures!

What Will You Need To Do?

Registry enrollment is simple. You or your caregiver will be asked to fill out a Registry Questionnaire – it’s just like giving a history of your epilepsy at the doctor’s office. Periodically, you may be asked to update your information.

How Do You Join?

  • 1,459 people living with a rare epilepsy enrolled in the original REN registry (2014-2018).
  • An updated registry survey is currently being built, which will be less time consuming and burdensome for people with epilepsy and their caregivers to complete.
  • Information captured by both registry surveys will be kept; therefore, people who are already enrolled will not need to re-complete the survey.
  • The new registry will launch in Summer 2019. Please come back to this webpage then. Or complete the REN Enrollment Contact Form and we will be in touch with you when more information is available.

Want More Information?

A boy with his dog

Are you a researcher?

Download, complete and return this form to request REN data

Have a rare epilepsy not on the list? Looking for more information? 

Please provide your name and contact information for additional information. You may also contact Epilepsy Foundation at:
Phone: 888-886-3745
Email: ren@efa.org

Reviewed By: 
Epilepsy Foundation Research Team
on: 
Wednesday, November 20, 2019