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Resources and Support for Affected Families

Resources and Support for Affected Families

National Tay-Sachs and Allied Diseases Association (NTSAD) provides effective and long-term support for patients and families affected by Canavan disease and other associated lysosomal storage diseases (Canavan, Tay Sachs, and associated diseases.) NTSAD has a comprehensive listing of support services on their website, and we urge you to visit them to learn more about resources and support for patients, their families and caregivers. 

If you have a child with Canavan disease, you may qualify for Social Security disability benefits.  We have posted a downloadable overview of Social Security Disability benefits and the application process.

Research into Treatments for Canavan Disease

There are two ongoing clinical trials and two patient registries. For more information, click here