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.
REN MEMBERS
-
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.
REN PARTNERS
-
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.
MEMBERS
Alliance to Cure Cavernous Malformation
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)
Bridge the Gap - SYNGAP Education and Research Foundation
CFC International Cardio-Facio-Cutaneous Syndrome
Chelsea’s Hope Lafora Children Research Fund
Cortical Malformation & Cephalic Disorder Foundation (CMCD)
Cri du Chat Research Foundation
CSNK2B Foundation (Poirier-Bienvenu neurodevelopmental syndrome (POBINDS))
CureGRIN Foundation (Grin1, Grin2A, Grin2B & Grin2D)
Dravet Syndrome Foundation (SCN1A)
Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet)*
DYNC1H1 Association (NEW 2024)
DYRK1A Syndrome US & International Association
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)
Gould Syndrome Foundation (COL4A1/A2)
Hope for Hypothalamic Hamartomas
International Foundation for CDKL5 Research
Jordan's Guardian Angels
(Jordan's Syndrome - PPP2R5D, PPP2R1A, PPP2R5C)
KCNA2 Epilepsy Global Alliance
KCNQ3 Parent / Caregiver Support and Discussion Group
Koolen-de Vries Syndrome Foundation
Life Association for Rare Diseases in Children* (NEW 2024)
MAST Genes Research Foundation (MAST 1-4, L)
Partners Against Mortality in Epilepsy (PAME)(NEW 2024)
Pediatric Epilepsy Surgery Alliance
Phelan-McDermid Syndrome Foundation (PMSF)
PMG Awareness Organization, Inc.
Ring20 Research & Support UK CIO*
Scarlett's GABRA1 Village (NEW 2024)
SHINE Syndrome Foundation (DLG4-Synaptopathy)
Sleep-Related Hypermotor Epilepsy Support (She NFLE ADNFLE)
Tatton Brown Rahman Syndrome (TBRS) Community (DNMT3A gene variations)
TESS Research Foundation (SLC13A5)
The DESSH Foundation (WAC gene / DeSanto-Shinawi Syndrome)
The Global Foundation for Peroxisomal Disorders
The Schinzel-Giedion Syndrome Foundation
The Sturge-Weber Foundation (GNAQ)
US MEF2C Foundation (NEW 2024)
Yellow for Yiannis IRF2BPL-NEDAMSS Foundation ((NEW 2024)
Warsaw Breakage Syndrome Foundation (NEW 2024)
*Organizations based outside of the United States. Many organizations serve global constituencies.
PARTNERS
American Epilepsy Society (AES)
Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA)
Association of University Centers on Disabilities (AUCD) (NEW 2024)
Childhood Neurology Foundation (CNF)
Developmental & Epileptic Encephalopathies (DEE-P Connections)
Epilepsy Alliance America (NEW 2024)
Epilepsy Leadership Council (ELC)
Epilepsy Learning Healthcare System (ELHS)
Epilepsy Reach (NEW 2024)
National Association of Epilepsy Centers (NAEC)
Orphan Disease Center (ODC)
Pediatric Epilepsy Research Consortium (PERC)
REN expresses our sincere gratitude to the American Epilepsy Society for serving as our fiscal sponsor.