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Around the age of 4 to 6 months, infants may start to regress in their development and to show other signs and symptoms of Sandhoff disease as listed below: • increasing mental and motor deterioration. The infant begins to decrease alertness and interest in surroundings and loses previously attained movement skills.
National Tay-Sachs and Allied Diseases Association (NTSAD)
This website provides support, resources, and information for families affected with Tay-Sachs and Sandhoff disease, and other similar diseases.
Lysosomal Diseases Support Group
This group is based in New Zealand, but their website has a listing of international support groups for lysosomal storage disorders, such as Sandhoff and Tay-Sachs disease.
This website was originally started by a family affected with Tay-Sachs disease, and includes links to families with Sandhoff disease. You may be able to contact these families for more information & resources, or simply to share your stories.
National Institute on Neurological Disorders and Stroke (NINDS)
This website provides a short summary on Sandhoff disease.