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Self Help Clearinghouse

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

Trisomy 18 Foundation

Online. Support for parents and families of a child diagnosed with Trisomy 18. Message board and chatroom.



Verified: 2/12/2013

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)

Fax: 585-594-1957



Verified: 2/7/2013

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