The Rare Epilepsy Network is comprised of MEMBERS and PARTNERS. It is overseen by a Coordinating Committee comprised of volunteers from the Member Network. It is administered by a Director.
REN MEMBERs directly represent a rare epilepsy constituency and are committed to research and the REN mission and goals. They include Patient Advocacy Groups (PAGs) defined broadly irrespective of legal status (501c3) and may also include support and Facebook groups. REN MEMBERS also include other epilepsy or broader non-profit organizations who share a commitment to research on the rare epilepsies and the REN mission/goals. Groups that are not US-based are welcome to participate, since diseases and research have no boundaries, although some REN activities may focus on the United States funding and policies.
REN PARTNERS include organizations with specific expertise to advise and consult and serve as non-voting members. They also include consortia, academia, coalitions, researchers, and professional associations. These partners will be engaged on a project-by-project basis and serve as non-voting members.
Association for Rare Neurodevelopmental Disorders (Norway)*(coming soon)
ASXL Rare Research Endowment Foundation (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, Bainbridge-Ropers Syndrome)
Batten Disease Support & Research Association (BDSRA)(CLN1-CLN14)
CSNK2B Foundation (Poirier-Bienvenu neurodevelopmental syndrome (POBINDS))
Fundacion Libellas (Gene NALCN and UNC80)*
Tatton Brown Rahman Syndrome (TBRS) Community (DNMT3A gene variations)
*Organizations based outside of the United States. Many organizations serve global constituencies.
Orphan Disease Center (ODC)
REN expresses our sincere gratitude to the American Epilepsy Society for serving as our fiscal sponsor.