Canavan Disease (cont.)

The prognosis for Canavan disease is poor. Death usually occurs before age 4, although some children may survive into their teens and twenties.

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.

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

Source: MedicineNet.com
http://www.medicinenet.com/canavan_disease/article.htm