Members & Partners
The Rare Epilepsy Network is comprised of nearly 150 members and partners. It is overseen by a Coordinating Committee (CC) comprised of volunteers from the Member Network. It is administered by a Director. To join, click here.
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REN Members
REN members represent a rare epilepsy disorder constituency; they include Patient Advocacy Groups (PAGs) irrespective of legal status (501c3) and may include support and Facebook groups; and may include groups that are not US-based, although some REN activities focus on the United States funding and policies.
REN Partners
REN partners include organizations with specific expertise to advise, consult, and serve the Network; partners may: include consortia, academia, coalitions, researchers, and professional associations; be engaged on a project-by-project basis; and serve as non-voting members.
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Association for Rare Neurodevelopmental Disorders (Norway)*(coming soon)
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ASXL Rare Research Endowment Foundation (Bohring-Opitz Syndrome, Shashi-Pena Syndrome, Bainbridge-Ropers Syndrome)
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Batten Disease Support & Research Association (BDSRA, CLN1-CLN14)
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CSNK2B Foundation (Poirier-Bienvenu neurodevelopmental syndrome (POBINDS))
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Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet)*
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Foundation for USP7 Related Diseases (Hao-Fountain Syndrome)
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Fundacion Libellas (Gene NALCN and UNC80)*
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GNB1 Advocacy Group (NEW 2024)
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Hope for Annabel (NEW 2024)
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Jordan's Guardian Angels (Jordan's Syndrome - PPP2R5D, PPP2R1A, PPP2R5C)
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KIF1A​
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MAST Genes Research Foundation (MAST 1-4, L)
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Tatton Brown Rahman Syndrome (TBRS) Community (DNMT3A gene variations)
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*Organizations based outside of the United States. Many organizations serve global constituencies.
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American Epilepsy Society (AES)
Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA)
Association of University Centers on Disabilities (AUCD) (NEW 2024)
Child Neurology Foundation (CNF)
Developmental & Epileptic Encephalopathies (DEE-P Connections)
Epilepsy Alliance America (NEW 2024)
Epilepsies Action Network (EAN)
Epilepsy Leadership Council (ELC)
Epilepsy Learning Healthcare System (ELHS)
Epilepsy Reach (NEW 2024)
National Association of Epilepsy Centers (NAEC)
Orphan Disease Center (ODC)
Partners Against Mortality in Epilepsy (PAME) (NEW 2024)
Pediatric Epilepsy Research Consortium (PERC)
REN expresses our sincere gratitude to the American Epilepsy Society for serving as our fiscal sponsor.