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.
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)*
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
Phelan-McDermid Syndrome Foundation (PMSF)
PMG Awareness Organization, Inc.
Ring20 Research & Support UK CIO*
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 Brain Recovery Project: Childhood Epilepsy Surgery Foundation
The DESSH Foundation (WAC gene / DeSanto-Shinawi Syndrome)
The Global Foundation for Peroxisomal Disorders
The Schinzel-Giedion Syndrome Foundation
The Sturge-Weber Foundation (GNAQ)
*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)
Childhood Neurology Foundation (CNF)
Developmental & Epileptic Encephalopathies (DEE-P Connections)
Epilepsy Leadership Council (ELC)
Epilepsy Learning Healthcare System (ELHS)
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.