Table 1 Organizations providing IS information and family resources

American Epilepsy Society^a

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 Sciences^a

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 Alliance^a

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