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Clinics for Rare Epilepsies

This page helps connect you to clinics and care centers for rare epilepsies. For each disorder, we’ve included links either to specific clinics or to organizations that maintain up-to-date directories.

 

We don’t maintain these resources ourselves but we’re pointing you to the experts who do. Our goal is to help you find accurate, reliable care information, quickly and easily! If you are aware of missing clinics, broken links or updates, please contact info@rareepilepsynetwork.org

Disorder
Where to Find Clinic
Angelman Syndrome
AS Foundation
Beckwith-Wiedemann/ Malan
Children's Hospital of Philadelphia
CACNA1A- Related Disorders
UT Health Houston
CDKL5
Intl. Foundation for CDKL5 Research
Cardiofaciocutaneous Syndrome (CFC)
CFC International
Cavernous Malformation
Alliance to Cure Cavernous Malformation
Chromosome 8p
Project 8p
DRPLA
Cure DRPLA
Dravet Syndrome
Dravet Syndrome Foundation
Dup15q
Dup15q Alliance
GRIN2B
GRIN2B Foundation
Gould Syndrome
Dr. Musolino at Massachusetts General Hospital
Hypothalamic Hamartoma
Hypothalamic Hope Hamartomas
KCNC1
Children's Hospital of Philadelphia
Kleefstra Syndrome
The Kleefstra Syndrome Foundation
Lennox- Gastaut Syndrome (LGS)
LGS Foundation
NR2F1
NR2F1 Foundation
RASopathies
Rasopathies Network
Ring14
Ring14 USA
SCN2A
Children's Hospital CO
SCN2A
FamilieSCN2A
SCN8A
Children's Hospital CO
SLC13A5
TESS Research Foundation
STXBP1
STXBP1 Disorders
SYNGAPI
SYNGAP Research Fund
Sturge-Weber Syndrome
The Sturge-Weber Foundation
Tuberous Sclerosis Complex (TSC)
TSC Alliance

Rare Epilepsy Network

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