Resources- Specific Diagnosis Card Catalog- Trisomy 13 / 18

Who to Contact

SOFT: Support Organization for T18, T13 & Related Disorders
2982 S Union Street
Rochester, New York, USA 14624
716-594-4621
800-716-SOFT (toll-free)
Web: 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.

Where to Go Chat with Others

Trisomy 18 Support
This list is to bring parents, family, and friends of Trisomy 18 babies or children together.

Trisomy Online
Hosts several on-line support groups for those whose lives have been touched by the diagnosis of a trisomy chromosomal disorder including Trisomy 18, Trisomy 13 and many other rarer Trisomy disorders.

Trisomy 18 Support Community Boards