How do I find a center of excellence in Sanhoff disease?
The treatment for Sandhoff disease is nearly identical to the treatment for Tay-Sachs. Any center that specializes in the treatment of Tay-Sachs will also be a center of excellence for Sandhoff disease. The American College of Medical Genetics Clinic Services Search Engine is a resource that patients and doctors can use to locate health specialists that specialize in treating specific syndromes. For Sandhoff disease, check "NeuroMetabolic (includes lysosomal storage diseases)" to find a center nearby.
National Organization of Rare Disease (NORD) "Sandhoff Disease"