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Table 1 Organizations providing IS information and family resources

From: Infantile spasms (West syndrome): update and resources for pediatricians and providers to share with parents

Organization Website Key resources
American Epilepsy Societya · Provides links to drug assistance programs, treatment guidelines, research publications
Epilepsy Foundation · IS fact sheets and awareness
Epilepsy Information Service of Wake Forest Health Sciencesa · Epilepsy information toll free hotline, vigabatrin access assistance, support groups
Epilepsy Therapy Project · IS fact sheets · A rare diseases online community where patients, caregivers, healthcare professionals, and organizations can come for support and resources
Infantile Spasms Awareness · IS education and information for pediatricians and parents
Lundbeck, Inc · Comprehensive vigabatrin resource for healthcare providers and patients/families; distribution access to vigabatrin
National Institute of Neurological Disorders and Stroke (NINDS) · Infantile spasms information page with overview on IS
National Organization for Rare Disorders (NORD) · Patient Assistance Programs
· Online support community, ACTH access assistance
Questcor Pharmaceuticals · The Acthar Support & Access Program (ASAP) for prescriptions and reimbursement support related to ACTH treatment
Tuberous Sclerosis Alliancea · Fact sheets on IS in children with TSC
· IS video (
· Online discussion groups
· Links to
  1. aOrganizations that provide resources specifically for health care providers.