UPDATE October 13, 2020:

The original REN survey is no longer actively enrolling. REN data is available for research request and a dashboard previewing a subset of data collected is now viewable.

This Study is Now Closed

You are not alone.

Individually rare epilepsies are rare, but together, rare epilepsies make up a large and powerful group who can teach the world more about the brain, epilepsy and medical practice.

Together we are strong!

The Rare Epilepsy Network (REN) is a partnership between rare epilepsy organizations, the Epilepsy Foundation, Columbia University, and Research Triangle International to conduct research to improve outcomes of rare conditions associated with epilepsy and seizures.

The REN is committed to addressing the urgent health challenges of our rare epilepsy community by engaging patients and caregivers, making data available to researchers, and investigating causes and consequences in order to improve diagnosis, treatment, and find cures.

Through REN, you have the opportunity to share your stories and participate in research to make a difference.

You and your loved ones can:

  • 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

Participation is via online survey, and to date over 1,200 patients have enrolled in the REN via the online portal found at https://ren.rti.org/Enroll

To be eligible, the following criteria must also be met:

  • A person that has had at least one “unprovoked” seizure in their lifetime. An unprovoked seizure is one that was not caused by a fever or the direct result of a head injury.
  • A person that is at least 18 years old and can consent for themselves OR a person of any age that is not a ward of the State and has a parent or legal guardian that can consent on their behalf.

Get connected to our partner organizations!  Many of these groups offer additional support resources for families living with a rare epilepsy.

Community is key to success of projects like this one. Join Us.