Resources- Specific Diagnosis Card Catalog- Spina Bifida
See also Latex Allergy, Hydrocephalus
Who to Contact
Spina Bifida Association of America (SBAA)
4590 McArthur Blvd., NW, Suite 250
Washington, D.C., USA 20007-4226
(202) 944-3285
(800) 621-3141
Fax: (202) 944-3295
E-mail: sbaa@sbaa.org
Web: http://www.sbaa.org/
The Spina Bifida Association of America's mission is to promote the prevention of spina bifida and to enhance the lives of all affected. They promote public awareness, and provide funding for research. They have local chapters and a directory is available. Contact the national office at the above address for information concerning a chapter in your locality. They will provide assistance to individuals who wish to start a support group in their locality. The Association provides educational scholarships. Call their 800 number or write to the above address for further information.
SBAA publishes a bi-monthly newsletter, SBAA Insights, that is a benefit of membership. They also have brochures including, "Educational Issues among Children with Spina Bifida," "Latex (natural rubber) Allergy in Spina Bifida Patients," and "Learning Among Children with Spina Bifida." The Association has books and videos for distribution, among these are, books including "Friends in the Park," a book for children, "Confronting The Challenges of Spina Bifida," "A Guide to Hydrocephalus," and a Clinic Directory. They also have videos including, "The Challenge Video Tape," and "How to Guide Your Child Through Special Education." A complete publication list is available from the above address. The Association collects information on physicians and researchers who treat/study the condition and disseminates this information to their membership. They provide information and referrals to other organizations and resources. Additionally, they host an annual conference. Call for further information.
Spina Bifida and Hydrocephalus Association of Canada
#977-167 Lombard Avenue
Winnipeg, Manitoba, Canada
R3B 0T6
204-925-3650
204-925-3654 (fax)
800-565-9488 (toll-free)
E-mail: spinab@mts.net
Web: www.sbhac.ca
The Spina Bifida Association of Canada has a mission to improve the quality of life of all individuals with spina bifida and/or hydrocephalus and their families. They serve the parents of children with spina bifida, adults with spina bifida and professional who work with them. They have local support groups and provide a directory of these groups. Some province chapters provide parent-to-parent matching, call a group in your area for further information.
SBAC publishes a quarterly newsletter, Podium, that is included in membership dues, and have several brochures available including, "Generic on Spina Bifida," "Generic on Hydrocephalus," and "Folic Acid Supplementation." They offer a new parent packet that gives a general overview or spina bifida, and have a bibliography of books and articles. They also have a lending library for Canadians. SBAC will provide referrals to other resources and providers. The Spina Bifida Association of Canada hosts a national conference; call for further information.
Where to Go Chat with Others
BIFIDA-L:
A general spina bifida discussion list
SB-Parents:
For people interested in the care of children who have spina bifida
SB Moms-N-Dads:
For moms, dads, and caretakers of children and individuals with spina bifida
SB-List
For parents of children and youth with spina bifida.
To join, send an e-mail message with your request to: rowley@waisman.wisc.edu
FetalSurgery-4-SB
This is an informational and support list for those interested in FS4SB and for those who are current or former patients. This list can also be used for general Spina Bifida information.
alt.support.spina-bifida
Usenet News Group
Family Village Discussion Board - Spina Bifida
Learn More About It
What is Spasmodic Torticollis?
Understanding Spasmodic Torticollis
Links
National Spasmodic Torticollis Association
Action for Dystonia, Diagnosis, Education Research
United Kingdom
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