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Aicardi Syndrome Newsletter, Inc.
International network. Founded 1983. 5 regional chapters. Support for families with daughters with Aicardi syndrome, a rare seizure disorder that affects primarily females and is characterized by seizures and retinal lesions. Resources, research projects, biennial conferences, phone support network, research group, newsletters, information and referrals. Dues $25/year.
Aicardi Syndrome Newsletter
Write:
1510 Polo Fields Ct.
c/o Denise Park Parsons
Lousiville, KY 40245
Voice: 502-244-9152
Website: http://www.aicardisyndrome.org
E-mail: aicnews@aol.com
Verified: 4/30/2007
Infantile Spasms List
Online. 1300+ members. Founded 1998. Support and information for parents and caregivers of children with infantile spasms. Opportunity to discuss their children, treatment options and offer support. Professionals welcomed.
Website: http://health.groups.yahoo.com/group/infantilespasms
Verified: 4/28/2007
The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp
If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org
Copyright © 2008 American Self-Help Group Clearinghouse. All rights reserved.
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