Canavan Disease (cont.)
Is there any treatment for Canavan disease?
Canavan disease causes progressive brain atrophy. There is no
cure, nor is
there a standard course of treatment. Treatment is symptomatic and supportive.
What is the prognosis for Canavan disease?
The prognosis for Canavan disease is poor. Death usually occurs before age 4,
although some children may survive into their teens and twenties.
What research is being done on Canavan disease?
The gene for Canavan disease has been located. Many
laboratories offer prenatal screening for this disorder to populations at risk.
Scientists have developed animal models for this disease and are using the
models to test potential therapeutic strategies. Research supported by the NINDS
includes
studies to understand how the brain and nervous system normally develop and
function and how they are affected by genetic mutations. These studies
contribute to a greater understanding of gene-linked disorders such as Canavan
disease, and have the potential to open promising new avenues of treatment.
Select this link to view a list of studies currently seeking patients.
For more information
Canavan Foundation
450 West End Avenue
#10C
New York, NY 10024
info@canavanfoundation.org
http://www.canavanfoundation.org
Tel: 212-873-4640 877-4-CANAVAN (422-6282)
Fax: 212-873-7892
Canavan Research Foundation
88 Route 37
New Fairfield, CT 06812
info@canavan.org
http://www.canavan.org
Tel: 203-746-2436
Fax: 203-746-3205
Canavan Disease Research
P.O. Box 8194
Rolling Meadows, IL 60008-8194
info@canavanresearch.org
http://www.canavanresearch.org
Tel: 800-833-2194
Genetic Alliance
4301 Connecticut Avenue, N.W.
Suite 404
Washington, DC 20008-2369
info@geneticalliance.org
http://www.geneticalliance.org
Tel: 202-966-5557 800 336-GENE (4363)
Fax: 202-966-8553
National Tay-Sachs and Allied Diseases Association
2001 Beacon Street
Suite 204
Brighton, MA 02135
info@ntsad.org
http://www.ntsad.org
Tel: 617-277-4463 800-90-NTSAD (906-8723)
Fax: 617-277-0134
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60178
office@ulf.org
http://www.ulf.org
Tel: 815-895-3211 800-728-5483
Fax: 815-895-2432
SOURCE: National Institute of Neurological
Disorders and Stroke, National Institutes of Health
Last Editorial Review: 10/29/2008
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