Members & Partners
The Rare Epilepsy Network is comprised of hundreds members and partners (and growing). 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. ​
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.
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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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AUTS2 Research Foundation
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Batten Disease Support & Research Association (BDSRA)(CLN1-CLN14)
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CMCD Foundation (Cortical Malformation & Cephalic Disorder Foundation)
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CSNK2B Foundation (Poirier-Bienvenu neurodevelopmental syndrome (POBINDS))
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Cure CLCN6
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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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Jordan's Guardian Angels (Jordan's Syndrome - PPP2R5D, PPP2R1A, PPP2R5C)
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KARES Foundation (KDM5C)
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KIF1A​
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MAST Genes Research Foundation (MAST 1-4, L)
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PCH-Familie e.V. (TSEN54)
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PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome)
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Tatton Brown Rahman Syndrome (TBRS) Community (DNMT3A gene variations)
*Organizations based outside of the United States. Many organizations serve global constituencies.
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.