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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.

"George to the Rescue" is a resource offered by television station NBC New York to people in the New York metropolitan area. Host George Oliphant and his team of contractors and designers rescue the homes of deserving people, often those who have family members with special accessibility needs. Application online.

Identifying Canavan Patients Worldwide

There are now two efforts underway to identify Canavan disease patients around the world, which will help to recruit research subjects and facilitate research about the disease.

One is a natural history study and bio-depository that the Canavan Foundation co-funded with the National Tay-Sachs and Allied Diseases Association (NTSAD) in 2017, under the leadership of Dr. Heather Lau at NYU. This effort is a collaboration with Mass General Hospital and clinicians in Germany to create a unified database that reduces redundancy by providing a unique global identifier and standardized language for data collection. The natural history registry is now open. More information will be available shortly. 

The second effort, initiated by Canavan Research Illinois, is Invitae's Canavan Patient Insight Network (PIN). Invitae is a company based in Silicon Valley that aims to “optimize the search for better treatments for multiple diseases.” If you or anyone you know has received a diagnosis of Canavan disease, you can register here.