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Leading the Fight to treat and cure
Tay-Sachs, Canavan and related diseases

Newly Diagnosed - Infantile/Juvenille

My child, grandchild or someone I love has just been diagnosed with Classic Infantile or Juvenile Tay-Sachs, Sandhoff, GM-1 or Canavan; now what? Take a deep breath and know that you've come to the right place. The day you received the diagnosis might have been the worst day of your life. We understand! You are not alone! NTSAD is dedicated to finding a cure & caring for families.

We can help you:

  • Understand the diagnosis & symptom management options
  • Keep updated on research efforts
  • Connect with other families that truly understand


Getting Started:

  • Contact Kim Kubilus, Director of Family Services at This email address is being protected from spambots. You need JavaScript enabled to view it. or 800.906.8723.

  • Read the Newly Diagnosed pages
    Infantile/Juvenile - First Steps -  help getting organized, finding a doctor, and knowing your insurance
    Philosophy of Care - thinking through what's most important
    Free Information Packet - great information on how to manage and cope
    Register for Research
    Become A Member - join NTSAD for even more support

  • Contact Kim anytime with questions, issues, concerns or just to chat!



 

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