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

Learn About the Rare Epilepsy Landscape

Epilepsy Foundation commissioned an analysis of the Rare Epilepsy Landscape (RELA). This first-of-its-kind comprehensive survey of rare epilepsy organizations includes information about 44 rare epilepsy organizations' founding, mission, staffing, infrastructure, funding, and more. Further, the RELA identifies many shared challenges, as well as opportunities for collaboration around research, information, support, professional education, and advocacy. 

The RELA was developed in consultation with rare organization leaders with special thanks to TS Alliance, Dravet Foundation, The Cute Syndrome, Phelan-McDermid Syndrome Foundation, SLc6a1 Connect, Wishes for Elliott, Cure Shank, and the International Foundation for CDKL5 Research, as well as other epilepsy stakeholders including American Epilepsy Society (AES), Citizens United for Research in Epilepsy (CURE), Child Neurology Foundation (CNF), National Institute for Neurological Disorders and Stroke (NINDS), Centers for Disease Control (CDC) and more. 

These resources are available to all epilepsy stakeholders to inform strategic planning and partnerships. To request additional insights or data from the survey or recommend missing organizations or syndromes, please contact rare@efa.org.

Contact the Epilepsy Foundation

You may also contact Epilepsy Foundation at:

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