Epilepsy Foundation

July 28, 2020

Dup15q Alliance is proud to partner with the Epilepsy Foundation on several rare disease initiatives in order to work collaboratively with other organizations to build better lives for people with epilepsy.

Rare Epilepsy Network (REN)
In 2013, the Epilepsy Foundation (EF) received an award from the Patient Centered Outcomes Research Institute (PCORI). The Epilepsy Foundtion patient-powered research network- PPRN award is unique because it represents a partnership among multiple groups, some of which because of their size might not otherwise be able to participate in national research. ┬áThis team is working to organize a data-base that will house patient- and caregiver-driven and -entered data. . Equally important is the partnership of the 10 rare-epilepsy organizations, now known as the Rare Epilepsy Network – REN. In fact, the initial vision for the sponsored program was driven by the seven rare-epilepsy groups: Aicardi Foundation, Dup15q Alliance, Phelan-McDermid, TS Alliance, Dravet, Hope for Hypothalamic Hamartoma, and Lennox-Gastaut. Since the initial application, CDKL5, PCDH19 Alliance, and Aarons Ohtahara have joined the cause. Each of these organizations represents a rare epilepsy. Each bring different strengths to the ability to research disorders that often do not receive enough attention. The entire rare epilepsy community will benefit from this alliance of organizations as we foster patient driven data in the rare epilepsies.