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Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Support for Families

If your family is now faced with the diagnosis of Canavan, GM1 Gangliosidosis, Sandhoff or Tay-Sachs disease, know that you are not alone. 

It is overwhelming and you don't know what to do next. We understand you are in the throes of processing the diagnosis and we're so sorry. You may have many questions and searching for answers, such as in asking Dr. Google, may be overwhelming and only ends up leading to more questions and confusion. We are here to help you navigate it all. NTSAD's Family Services Team is here to help you get what you need in this moment in time.

Help us get to know you and your family by completing this form here and we will be in touch with you.

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  • Access resources while you care for your child while coping with a diagnosis of Canavan, GM1 Gangliosidosis, Sandhoff and Tay-Sachs (GM2 Gangliosidosis).
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  • Access the resources and the information you may need while coping with a diagnosis of Late Onset GM1, Sandhoff or Tay-Sachs (GM2). You are not alone.
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  • We know you may have many questions and want to know all the answers all at once. Here are a few resources that may help you tackle them one by one. Remember - we're here to help.
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  • The Annual Conference is an invaluable experience. All families living with Canavan, GM1, Sandhoff or Tay-Sachs, infantile, juvenile or late onset are welcome. We're a small but mighty group when we're together.
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  • Having a brother or sister with Canavan, GM1, Sandhoff and Tay-Sachs or a related disease can be hard, confusing and overwhelming. We hope the resources here offer support that's unique to you as a rare sibling no matter your age.
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  • Receive the latest news in research and clinical trials, ways to keep moving research forward, resources that may help with caregiving, self-care, being mindful of siblings, remembering loved ones lost and celebrating the births.
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