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. This 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.
Epilepsy Learning Healthcare System
In 2019, the Epilepsy Foundation and its partners announced the launch of the Epilepsy Learning Healthcare System (ELHS), a multi-stakeholder collaboration to improve outcomes by implementing best practices and continual learning. The ELHS is designed to gather data about people with epilepsy from clinics around the country and analyze it centrally to identify practices that lead to better outcomes. Data collected include diagnosis, evaluation and care from healthcare providers, as well as information about seizure frequency, treatment side effects, comorbidities, self-management, and quality of life from people with epilepsy and their care partners.