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:

Aarons Ohtahara

Citizens United for Research in Epilepsy (CURE) 

The Cute Syndrome Foundation (PCDH19 Epilepsy)

Dravet Syndrome Foundation

Epilepsy Foundation

Epilepsy Foundation New England

FAMILIEScn2a

Insieme per la Ricerca PCDH19

Jack’s Army

PCDH19 Alliance

Rare Epilepsy Network (REN)

Wishes for Elliott

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.