Member Support Services

National Tay-Sachs & Allied Diseases Association (NTSAD) provides a variety of Member Support Services to parents, grandparents, siblings and other relatives of affected children, and to affected adults and to their immediate and extended families and to caregivers. The allied diseases in all their forms, from infantile through juvenile and chronic or adult onset, include the lysosomal storage diseases, such as Tay-Sachs, Sandhoff, GM-1 and Niemann-Pick, and the leukodystrophies such as Canavan and Pelizaeus-Merzbacher. For a complete list of allied diseases and descriptions please visit the Allied Disease Page.


The Member Support Services are designed to ease the struggle of receiving a devastating diagnosis of any of the allied diseases, such as Tay-Sachs, Sandhoff, GM-1, Metachromatic Leukodystrophy or Canavan. Please know the entire NTSAD ‘family’ is here to help. Simply complete the membership form found here and submit it to NTSAD at:

National Tay-Sachs & Allied Diseases Association
2001 Beacon Street
Suite 204
Boston, MA 02135
Phone: 800-906-8723
Fax: 617-277-0134
info@ntsad.org

Membership will give you, individually, and your family, collectively, access to the following NTSAD's Member Support Services:

  • International Peer Support Group (PSG) Network, including a subsidized calling card to phone other PSG members (available to parent members & U.S. residents only)
  • The PSG Directory, which includes confidential contact and diagnosis information
  • Lifeline - our quarterly newsletter for members only
  • Topic of the Week – our weekly electronic newsletter with broad distribution
  • Access to NTSAD's Lending Library
  • Annual Family Conference- held annually in April or late March.

If you decide to join, please understand that we ask for $50 to help defray expenses connected with Member Services, including printing, postage and related costs, but we will accept dues of any amount or waive them entirely if it is a financial hardship. Simply let NTSAD staff know that dues are not in your budget at this time. All conversations about dues are strictly confidential.

CONTACT PERSON:
Kim Crawford, Director of Member Services
Kim@ntsad.org or 1-800-906-8723