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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 http://www.aesnet.org · Provides links to drug assistance programs, treatment guidelines, research publications
Epilepsy Foundation http://www.epilepsyfoundation.org · IS fact sheets and awareness
Epilepsy Information Service of Wake Forest Health Sciencesa http://www.wakehealth.edu/Neurosciences/Comprehensive-Epilepsy-Center/Epilepsy-Resources.htm · Epilepsy information toll free hotline, vigabatrin access assistance, support groups
Epilepsy Therapy Project http://www.epilepsy.com · IS fact sheets
HopefulCircle.org http://www.hopefulcircle.org · A rare diseases online community where patients, caregivers, healthcare professionals, and organizations can come for support and resources
Infantile Spasms Awareness http://infantilespasmsinfo.org · IS education and information for pediatricians and parents
Lundbeck, Inc http://www.lundbeckshare.com · Comprehensive vigabatrin resource for healthcare providers and patients/families; distribution access to vigabatrin
National Institute of Neurological Disorders and Stroke (NINDS) http://www.infantilespasms.org · Infantile spasms information page with overview on IS
National Organization for Rare Disorders (NORD) http://www.rarediseases.org · Patient Assistance Programs
· Online support community, ACTH access assistance
Questcor Pharmaceuticals http://www.questcor.com · The Acthar Support & Access Program (ASAP) for prescriptions and reimbursement support related to ACTH treatment
Tuberous Sclerosis Alliancea http://www.tsalliance.org · Fact sheets on IS in children with TSC
· IS video (http://www.youtube.com/watch?v=35wRjuvg9MI)
· Online discussion groups
· Links to http://www.seizuretracker.com
  1. aOrganizations that provide resources specifically for health care providers.