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.
Equipment
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.
Research
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 & Resources
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.
Courageous Parents Network
Empowering parents caring for children with serious illness through video, shared community, professional guidance, and palliative care.
Jewish Genetic Disease Consortium (JGDC)
NTSAD is part of this alliance to raise awareness about genetic screening.
NeuroJourney from Courageous Parents Network
This tool will help orient and support you as you navigate the ever-evolving needs of your child and the complex decisions that lie ahead.
Need to Talk?
Our Family Services Team is here to help answer your questions, share relevant information and connect you with our Community.
Becky Benson
Family Support and Engagement 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 becky@ntsad.org
