First Connections

Providing Reliable Information and Connections since 1957.

Individual and Family Support

Welcome to NTSAD’s First Connections Program

Thank you for reaching out to NTSAD. Whether you or a loved one has recently received a diagnosis, are seeking answers, or are supporting someone affected by Tay-Sachs, Canavan, GM1 gangliosidosis, or Sandhoff disease, we are here to help.

By completing this form, you’ll help us better understand your situation so we can connect you with appropriate resources, support, and members of our community.

Do you have a child recently diagnosed?
Are you or a loved one an adult recently diagnosed? *
If you are not a parent or an adult recently diagnosed, are you a...

Getting to Know You and Your Family

The questions below help us get to know your family, your loved one, the journey to diagnosis, and how we can help your family right now.

What is the diagnosis?
Do you have other children?

How Best to Contact You

Being able to reach out to you is important to us. Please provide your contact information below:

What is the best way to contact you? *
Would you like us to introduce you to another individual or family in our community?

Reach out to us and let us know how we can help.

Navigating a Diagnosis

Learn how to make your care plan, build a care team, and communicate with confidence.

Supporting Siblings

Help siblings understand what it means to have a brother or sister with a rare disease.

Resource Library

Browse our library of reliable and accurate information about rare diseases.