Epilepsy Genetics Program | Patient Resources

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Contact Epilepsy Genetics Program

  • 1-617-919-6917
  • International: +1-617-355-5209

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


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.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944