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.

Aicardi Syndrome Foundation
Alliance to Cure Cavernous Malformation
Alternating Hemiplegia of Childhood Foundation (NEW 2024)
Angelman Syndrome Foundation
Association for Creatine Deficiencies (NEW 2025)
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)
Beta Spectrin Foundation (SPTBN1) (NEW 2025)
BPAN Warriors
CACNA1H Alliance
CACNA1A Foundation
CASK Gene Foundation
CDG Care (NEW 2025)
CFC International Cardio-Facio-Cutaneous Syndrome
CHAMP1 Research Foundation
Channeling Hope (NEW 2024)
Chelsea’s Hope Lafora Children Research Fund
Chromosome 9p minus Network
CMCD Foundation (Cortical Malformation & Cephalic Disorder Foundation)
CNV Commission (Copy Number Variant)(NEW 2024)
Coalition to Cure CHD2
CRELD1 Warriors (NEW 2024)
Cri du Chat Research Foundation
CSNK2A1 Foundation
CSNK2B Foundation (Poirier-Bienvenu neurodevelopmental syndrome (POBINDS))
CTNNB1 Connect & Cure
CUL3C Support & Awareness
Cure AHC (NEW 2024)
Cure CLCN6 (NEW 2025)
Cure DHDDS* (NEW 2024)
Cure DHDDS USA (NEW 2024)
CURE Epilepsy
Cure GABA-A (NEW 2024)
Cure GABRB2
Cure KCNH1 Foundation
CureARS
CureDRPLA
CureGRIN Foundation (Grin1, Grin2A, Grin2B & Grin2D)
CureNURR1 (NR4A2-related disorder) (NEW 2025)
CureShank
CYFIP2 Network (NEW 2024)
DLG4 SHINE Foundation (formerly SHINE Syndrome Foundation)
DNM1 Epilepsy (NEW 2025)
Dravet Syndrome Foundation (SCN1A)
Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet)*
Dup15q Alliance
DYNC1H1 Association (NEW 2024)
DYRK1A Syndrome US & International Association
Epilepsy Foundation
FAM177A1 Research Fund
FamilieSCN2A Foundation
Finding Hope for FRRS1L
Foundation for Angelman Syndrome Therapeutics (FAST)
Foundation for USP7 Related Diseases (Hao-Fountain Syndrome)
FOXG1 Research Foundation
Fundacion de Hemisferctomía FundHemi * (NEW 2025)
Fundacion Libellas (Gene NALCN and UNC80)*
GABA-A Alliance (NEW 2024)
Genetic Epilepsy Team Australia/SCN2A Aust/NZ/Asia*
Glut1 Deficiency Foundation (SLC2A1)
Glut1Deficiency UK* (SLC2A1)
GNB1 Advocacy Group (NEW 2024)
Gould Syndrome Foundation (COL4A1/A2)
Grin2b Foundation
HNRNP Family Foundation
Hope for Annabel (NEW 2024)
Hope for HIE
Hope for Hypothalamic Hamartomas
Hope for ULD
IDefine-The Kleefstra Syndrome Foundation
International Foundation for CDKL5 Research
International SCN8A Alliance
Jordan's Guardian Angels (Jordan's Syndrome - PPP2R5D, PPP2R1A, PPP2R5C)
KARES Foundation (NEW 2025) (KDM5C)
KCNA2 Epilepsy Global Alliance

*Organizations based outside of the United States. Many organizations serve global constituencies.

REN Partners

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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.