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National Tay-Sachs and Allied Diseases Association

Information updated on Tuesday, February 20th 2024, 13:55
How to Contact the Provider
Contact email
[email protected]
Address
2001 Beacon Street Suite 204, Boston, MA, 02135
Phone
617-277-4463
Web
https://ntsad.org/
Services
Disability Awareness and Advocacy
Online Learning - blogs, resources, webinars, apps, telehealth
Online Social Network
Parent to Parent Support - Information, Referral, Mentoring
Research Institute or Funding
Sibling Support

NTSAD Mission
The mission of the National Tay-Sachs & Allied Diseases Association is to lead the fight to treat and cure Tay-Sachs, Canavan and related genetic diseases and to support affected families and individuals in leading fuller lives.

Our Vision
We will accomplish our mission by funding global cutting edge research, by helping to provide families with compassionate care and support and by collaborating effectively with the healthcare community to achieve our goals.

The National Tay-Sachs & Allied Diseases Association will:

  • Direct, fund and promote research to develop treatments and cures
  • Provide comprehensive support services to affected families and individuals
  • Guide prevention, education, awareness and screening through effective grassroots collaborations with chapters and affiliates.
  • Lead advocacy efforts as the recognized authority for this family of genetic diseases.

Family Services

NTSAD provides comprehensive support services to affected families and individuals through its Peer Support Group (PSG). NTSAD links more than 700 parents, grandparents, extended family, affected adults and their families and caregivers to each other via a confidential network. Other services available to PSG members include an Annual Family Conference, PSG directory, quarterly newsletters, and materials and support for fundraising and awareness events.

Having a brother or sister with Tay-Sachs, Sandhoff, GM1, Canavan or related disease can be hard, confusing and overwhelming. This section is just for you! It will help you understand the disease, connect with other siblings and learn about ways to play and interact with your affected brother or sister.