SOFT: Support Organization for T18, T13 & Related Disorders
2982 S Union Street
Rochester, New York, USA 14624
(585) 594-4621
800-716-SOFT (toll-free)
Web: http://www.trisomy.org/SOFT's mission is to increase awareness, provide information and support to families of children with T18, T13 and related disorders, and professionals. They have local support groups and a directory of these groups is available in the newsletter. SOFT will give assistance to anyone wishing to start a group in their area and has a database to provide parent-to-parent matching for those with a similar diagnosis.
SOFT Publishes quarterly newsletter, Soft Touch, that is included in membership dues and a professional newsletter, Trisomy in Review, once a year. They also have several brochures and a new parent packet that includes the brochures, newsletter and listings of common problems.
SOFT has books for distribution including, "Trisomy 18 - A Book for Families," "Trisomy 13 - A Book for Families," and "Care of the Infant and Child with T-18 & T13." They collect information on physicians and researchers who treat/study the diseases and make that information available to members. SOFT also provides information and referrals to other resources/providers.