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The Unmet Need

The epilepsy community is too separated and often lacks the ability to come together to tackle issues that impact the community. We want that to change. Engage in Research

Our Solution: Promoting Engagement

We believe in creating open channels of communication between people living with epilepsy, their families, advocates, researchers, healthcare professionals, industry, and investors. 

We have four research engagement programs: the Rare Epilepsy Network, the Epilepsy Learning Healthcare SystemResearch Rountable in Epilepsy, and the Epilepsy Foundation Pipeline Conference

Rare Epilepsy Network (REN)

The REN has three main goals:

  • To engage people living with epilepsy and their caretakers to participate in research driven by and centered on people living with epilepsy
  • To make data available to researchers
  • To investigate causes and consequences for rare epilepsies in order to improve diagnosis, treatment, and find cures

We are proud to spearhead the Rare Epilepsy Network (REN) registry in partnership with Columbia University, Research Triangle International (RTI), and a collection of over 25 patient organizations. Currently, we have over 1,300 people enrolled.

Research Roundtable for Epilepsy

We host an annual research roundtable which brings regulators from United States (U.S. Food and Drug Administration) and Europe (European Medical Agency) with academic neurologists, non-profits, and over 20 companies to discuss regulatory issues on upcoming drug development.

Previous and upcoming topics include: 

  • 2016 – Reducing Placebo Exposure in Clinical Trials
  • 2017 – Pediatric Drug Development
  • 2018 – Assessing Clinical Populations and Endpoints 

Visit here to see agenda, attendees, and resulting publications.

Epilepsy Foundation Pipeline Conference

The Epilepsy Foundation Pipeline Conference brings together decision makers with a stake in the field of epilepsy treatment, therapeutic innovation, and product development. 

Other Conferences

Learn more about other upcoming conferences and applying for conference support. 

Authored By: 
Sonya Dumanis PhD | Director of the Epilepsy Innovation Institute
Authored Date: 
10/2017
Reviewed By: 
Dr. Jacqueline French | Chief Scientific Officer
on: 
Tuesday, November 14, 2017