Resources for Families and Individuals

Practical Information and Tools to Help Cope with a Rare Diagnosis

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It’s normal to feel overwhelmed after getting a rare diagnosis. Take some time to absorb the news and process your feelings. When you’re ready, we’ve compiled some resources for families and individuals.

If you’re looking for information on a specific disease, please visit our Diseases page.

Care Plan Template

Make a care plan to share key information with healthcare providers, which is especially helpful in an emergency.

Care Tips Videos

Watch practical videos on topics like feeding tubes, physical therapy, and respiratory therapy.


Learn about therapeutic equipment that can help manage symptoms and promote comfort.

First Connections

Complete the First Connections form to access additional Family Services resources.

Our family conference is a safe space to connect with people who truly understand coping with a rare diagnosis.


While there is currently no cure for Tay-Sachs, Canavan, GM1, or Sandhoff disease, there are treatments to manage symptoms and slow the progression of the disease. Learn about ongoing research and read scientific articles on the allied diseases.

Clinical Trials

Clinical trials study new tests and treatments and evaluates their effects on volunteer participants.

Research Library

Read scientific articles published on Tay-Sachs, Canavan, GM1, and Sandhoff disease.

Support for Siblings

Siblings of people with a rare disease have deep feelings, big questions, and serious concerns. These resources help them cope with their unique experience.

Sibling Support Group

Join the private sibling support group on Facebook.

Gottlieb Sibling Scholarships

Apply for a scholarship for healthy siblings in college.

Sibling Support Guide

Get answers to common sibling questions in this booklet.

Partner Organizations

Learn more about partners around the world who are helping us fulfil our mission and vision.

Accion y Cura Para Tay-Sachs Foundation

Beatriz started the Accion y Cura Para Tay-Sachs Foundation to help families coping with Tay-Sachs disease in Spain.

Cure & Action for Tay-Sachs (CATS) Foundation

Dan and Patricia Lewi started this foundation to raise funds for research and help families in the United Kingdom.

Jewish Genetic Disease Consortium (JGDC)

NTSAD is part of this alliance to raise awareness about genetic screening.

Need to Talk?

Our Family Services Team is here to help answer your questions, share relevant information and connect you with our Community.

Diana Jussila

Director of Family Services

Since 1995, Diana has been supporting individuals and families as they navigate the realities of living with a rare disease.

You can email Diana at

Becky Benson

Family Services Manager

Since 2014, Becky has been providing personalized support to the NTSAD Community. She joined the Community in 2009 after her daughter, Miss Elliott, was diagnosed with Tay-Sachs.

You can email Becky at