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The Rare Epilepsy Network is comprised of 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, visit here



  • represent a rare epilepsy disorder constituency; 

  • 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.



  • include organizations with specific expertise to advise, consult, and serve the Network;  

  • may include consortia, academia, coalitions, researchers, and professional associations;

  • may be engaged on a project-by-project basis; and

  • serve as non-voting members.



Aicardi Syndrome Foundation

Alliance to Cure Cavernous Malformation

Angelman Syndrome Foundation 

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)

BPAN Warriors

Bridge the Gap - SYNGAP Education and Research Foundation 

CACNA1H Alliance

CACNA1A Foundation

CFC International Cardio-Facio-Cutaneous Syndrome

CHAMP1 Research Foundation 

Chelsea’s Hope Lafora Children Research Fund  

Chromosome 9p minus Network 

Coalition to Cure CHD2

Cortical Malformation & Cephalic Disorder Foundation (CMCD)

Cri du Chat Research Foundation 

CSNK2A1 Foundation

CSNK2B Foundation (Poirier-Bienvenu neurodevelopmental syndrome (POBINDS))

CTNNB1 Connect & Cure

Cure DHDDS* (NEW 2024)


CURE Epilepsy


CureGRIN Foundation (Grin1, Grin2A, Grin2B & Grin2D)

Cure KCNH1 Foundation


CYFIP2 Network (NEW 2024)

Dravet Syndrome Foundation (SCN1A)

Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet)*

DYNC1H1 Association (NEW 2024)

​DYRK1A Syndrome US & International Association

Dup15q Alliance 

Epilepsy Foundation 

FamilieSCN2A Foundation

FAM177A1 Research Fund

Finding Hope for FRRS1L

FOXG1 Research Foundation 

Foundation for Angelman Syndrome Therapeutics (FAST)

Foundation for USP7 Related Diseases (Hao-Fountain Syndrome)

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)

Gould Syndrome Foundation (COL4A1/A2)

Grin2b Foundation

HNRNP Family Foundation

Hope for HIE

Hope for Hypothalamic Hamartomas

Hope for ULD

International Foundation for CDKL5 Research

International SCN8A Alliance

Jordan's Guardian Angels
(Jordan's Syndrome - PPP2R5D, PPP2R1A, PPP2R5C)

KCNA2 Epilepsy Global Alliance

KCNC1 Foundation 

KCNQ2 Cure Alliance

KCNQ3 Parent / Caregiver Support and Discussion Group

KCNT1 Epilepsy Foundation


Koolen-de Vries Syndrome Foundation

KPTN Alliance

LGS Foundation (LGS)

Life Association for Rare Diseases in Children* (NEW 2024)

Lightning & Love Foundation

Louie's Huwe

Malan Syndrome Foundation

MAST Genes Research Foundation (MAST 1-4, L)

MED13L Foundation

Mickies Miracles 

Nonsense Mutation Foundation

NORSE Institute 

NR2F1 Foundation

Partners Against Mortality in Epilepsy (PAME)(NEW 2024)

Pediatric Epilepsy Surgery Alliance

PCDH19 Alliance (NEW 2024)

Phelan-McDermid Syndrome Foundation (PMSF)

PMG Awareness Organization, Inc.

​PPP3CA Hope Foundation

Project 8p

PVNH Support & Awareness 

Rasopathies Network

Ring 14 International*

Ring14 USA

Ring20 Research & Support UK CIO*

Scarlett's GABRA1 Village (NEW 2024)

SCN2A Asia Pacific*

SHINE Syndrome Foundation (DLG4-Synaptopathy)

SLC6A1 Connect

Sleep-Related Hypermotor Epilepsy Support (She NFLE ADNFLE)

SMC1A Foundation


STXBP1 Foundation 

Syngap Research Fund

Syngap1 Foundation

Tatton Brown Rahman Syndrome (TBRS) Community (DNMT3A gene variations) 

TBC1D24 Foundation

TESS Research Foundation (SLC13A5)

The Bow Foundation (GNAO1)

The CASK Gene Foundation

The Cute Syndrome Foundation 

The DDX3X Foundation

The DESSH Foundation (WAC gene / DeSanto-Shinawi Syndrome)

​The Global Foundation for Peroxisomal Disorders

The MANDKind Foundation

The Schinzel-Giedion Syndrome Foundation 

The SPATA Foundation

The Sturge-Weber Foundation (GNAQ)

THG1L Support Group

TSC Alliance

US MEF2C Foundation (NEW 2024)

V-ATPase Alliance (NEW 2024)

Yellow for Yiannis IRF2BPL-NEDAMSS Foundation ((NEW 2024)

YWHAG Research Foundation

Warsaw Breakage Syndrome Foundation (NEW 2024)

WWOX Foundation*

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

REN expresses our sincere gratitude to the American Epilepsy Society for serving as our fiscal sponsor. 

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