SOFT: Support Organization for T18, T13 & Related Disorders
2982 S Union Street
Rochester, New York, USA 14624
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.