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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Support Organization for Trisomy 18, 13, and Related Disorders

a/k/a: SOFT


2982 S. Union Street
Rochester, NY 14624-1926



800 Number




Email Address




The Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is a voluntary, non-profit network consisting of affected families and professionals who are involved in the care of individuals with trisomy 18, trisomy 13, and other related disorders (e.g., other chromosomal abnormalities involving the duplication of genetic material). Established in 1979, SOFT was created to provide affected families and professionals with the additional information and support they often need when confronted with a diagnosis of trisomy 18, 13, or related chromosomal disorders. The organization enables parents to share information and support; promotes education of healthcare professionals; provides appropriate referrals to affected families; holds local chapter gatherings for interested members; and conducts an annual international conference with seminars and cost-free consultations with doctors and other professionals.

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