top of page

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.


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))


CURE Epilepsy


CureGRIN Foundation (Grin1, Grin2A, Grin2B & Grin2D)

Cure KCNH1 Foundation


Dravet Syndrome Foundation (SCN1A)

Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet)*

​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)*

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)

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

bottom of page