Epilepsy Genetics Program | Patient Resources

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.