Trisomy 18 Info International


These are lists of all the non UK based support groups and online resources we have found for families with children with Trisomy 18 

SOFT USA
SOFT US, a very through site with a lot of information on expecting and raising a child with a rare trisomy. Research, links to organisations, an annual conference. Facebook page is here 

International Trisomy Alliance 
One of the most useful sites for research, founded by four parents of children with rare trisomies, it collates research and news on trisomy. You will usually find the most recent research here.  This was the most helpful site for us in pregnancy

The Tris (Tracking Rare Incidence Syndromes) Project
A project at the University of Illinois, gathering data on Trisomy 18 and 13 and other rare incidence genetic syndromes. Sign up to contribute to the data set. The data is used to track trends and produce articles for professionals regarding  aspects of care for children with rare trisomies.

Hope for Trisomy
A Texas based group set up by parents advocating for full, active treatment for children with T18 and T13. Aims to provide resources so parents can make fully informed choices. Link is to Facebook page. Their website currently in the process of being updated is here 

Trisomy 18 Foundation  
Website run by parents of a child with T18. Some limited resources and information. Some parents have expressed concerns as to where donations go however there is some information and support available on this site.

Trisomy Talk
Website set up a parent of a teenager with T18. A blog, family stories and information.

Trisomy Parents' Resource Guide
Facebook page of Eva's Gift. Trisomy information and awareness raising and support with raising children with special needs

Faces of Trisomy 
Gallery of surviving children with T18 and T13 and other rare trisomies.


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