Self Help Clearinghouse
Trisomy 18 Foundation
Online. Support for parents and families of a child diagnosed with Trisomy 18. Message board and chatroom.
SOFT (Support Organization For Trisomy)
National. 50 chapters. Founded 1979. Support and education for families of children with trisomy 18, trisomy 13 and related genetic disorders (including trisomy 9). Education for professionals. Quarterly newsletter, pen pal program, phone network, regional gatherings, annual international conference and booklets. Online information on finding a local support group. Dues $25.
c/o Barbara VanHerreweghe
2982 So. Union St.
Rochester, NY 14624
Voice: 585-594-4621 / Barbara Van Herreweghe or 1-800-716-7638 (for families)