Rare Epilepsy Network (REN) Research Opportunity: We Need Your Help!

We realize that everyone is very busy this time of year, but we are asking you to please take time to enroll in the Rare Epilepsy Network (REN), which is a very important research project that the Epilepsy Foundation is leading along with help from Columbia University, RTI International, and New York University. We have committed to enrolling a large number of families and we are below our target. The Epilepsy Foundation will be applying for another 3 year contract to continue the REN and we want to ensure our ability to continue this research.

Please help us meet our enrollment target by signing up today and completing the 45-minute survey, which is broken up into sections that you may complete over several days. No medical records are required. You will be asked if you have EEG or MRI reports that can be uploaded at a later date. The REN will provide us with much needed data to better understand rare epilepsies, treatment outcomes, and quality of life.
 
You may access the survey through the following link: https://ren.rti.org/Enroll. If you have already filled out the survey, we are very grateful for your participation!
 
Best Wishes for the New Year!

Sincerely,
 
The REN Executive Committee

Janice Buelow, R.N., Ph.D.
Epilepsy Foundation of America

Dale Hesdorffer, Ph.D.
Columbia University

Barbara Kroner, Ph.D.
Research Triangle Institute

Steve Roberds, Ph.D.
Tuberous Sclerosis Alliance