National Tay Sachs & Allied Diseases Association, Inc. - NTSAD
Organization URL(s)
info@ntsad.orgwww.ntsad.org/
Other Contact Information
2001 Beacon Street
Suite 204
Brookline,
MA 02135
800-906-8723 (Voice - Toll-free)
617-277-4463 (Voice)
617-277-0134 (FAX)
Description
National Tay Sachs & Allied Diseases Association (NTSAD) is the oldest genetic disease organization in the United States. NTSAD, its chapters and affiliates work for the prevention of Tay-Sachs and related genetic disorders through public and professional education, genetic counseling and testing of potential carriers. Referrals are provided to testing centers throughout North America and the world. The Association also provides a range of Family Support Services to families of affected children, including a Parent Peer Group, a Grandparent Group and Extended Family Group for support, education and advocacy, as well as an annual family conference. NTSAD administers an international laboratory quality control program, provides advocacy for families as well as general advocacy on issues related to genetics, raises funds for and supports research through its Research Initiative
Print Resources
NTSAD publishes literature on Tay-Sachs disease and allied lysosomal storage and leukodystrophy disorders and their prevention. The Association also publishes a test center directory for referral for carrier screening and genetic testing, along with other educational materials. Referrals are also made for genetic counseling and to physicians expert in this group of rare diseases. Educational material for professional and public use advising the public to be tested; and family service literature, including a comprehensive Home Care Manual for parents and caregivers.