Patient Resources | Overview
We understand that you may have many questions if your child has been diagnosed with an early onset epilepsy. There are a number of support groups available for patients with epilepsy and their family members. The following websites provide additional information about specific epilepsy syndromes, genetic variants, services, and support:
- Aaron's Ohtahara
- Aicardi Syndrome Foundation
- Angelman Syndrome Foundation
- Batten Disease Support & Research Association (BDSRA)(CLN1-CLN14)
- BPAN Warriors
- Bridge the Gap - SYNGAP Education and Research Foundation
- CACNA1H Alliance
- CACNA1A Foundation
- CHAMP1 Research Foundation
- Chelsea’s Hope Lafora Children Research Fund
- Citizens United for Research in Epilepsy (CURE)
- Coalition to Cure CHD2
- CSNK2A1 Foundation
- CSNK2B Foundation (Poirier-Bienvenu neurodevelopmental syndrome (POBINDS))
- CTNNB1 Connect & Cure
- CURE Epilepsy
- Cure GABRB2
- CureGRIN Foundation (Grin1, Grin2A, Grin2B & Grin2D)
- Cure KCNH1 Foundation
- CureShank
- Dravet Syndrome Foundation (SCN1A)
- Dravet Syndrome Foundation Spain (Fundación Síndrome de Dravet)*
- DYRK1A Syndrome US & International Association
- Epilepsy Foundation
- Epilepsy Foundation New England
- 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
- Glut1 Deficiency Foundation (SLC2A1)
- Gould Syndrome Foundation (COL4A1/A2)
- Grin2b Foundation
- HNRNP Family Foundation
- Insieme per la Ricerca PCDH19
- Hope for ULD
- International Foundation for CDKL5 Research
- International SCN8A Alliance
- Jack’s Army
- 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
- KIF1A
- Koolen-de Vries Syndrome Foundation
- KPTN Alliance
- LGS Foundation (LGS)
- Lightning & Love Foundation
- Louie's Huwe
- Malan Syndrome Foundation
- MAST Genes Research Foundation (MAST 1-4, L)
- MED13L Foundation
- Mickies Miracles
- NORSE Institute
- NR2F1 Foundation
- PCDH19 Alliance
- Phelan-McDermid Syndrome Foundation (PMSF)
- PPP3CA Hope Foundation
- Rare Epilepsy Network (REN)
- Scarlett's GABRA1 Village
- SCN2A Asia Pacific*
- SHINE Syndrome Foundation (DLG4-Synaptopathy)
- SLC6A1 Connect
- Sleep-Related Hypermotor Epilepsy Support (She NFLE ADNFLE)
- SMC1A Foundation
- SNAP25
- STXBP1 Foundation
- Syngap Research Fund
- 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 Schinzel-Giedion Syndrome Foundation
- The SPATA Foundation
- The Sturge-Weber Foundation (GNAQ)
- THG1L Support Group
- TSC Alliance
- Unique | Understanding Rare Chromosome and Gene Disorders
- YWHAG Research Foundation
- Wishes for Elliott
- WWOX Foundation*
* — Please note that neither Boston Children’s Hospital nor the Epilepsy Genetics Program at Boston Children’s Hospital unreservedly endorses all of the information found at the sites listed above.