Here is a list of other helpful resources:
http://web.coehs.siu.edu/Grants/TRIS/index.html
TRIS: The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase awareness and knowledge for families and professionals touched by rare trisomy conditions and aims to facilitate improved decision making for optimal services and supports for children and their families. The website includes survival data of children with Trisomy 18 based on user surveys. You can complete a survey here about your child and learn about survey results.
www.noahsneverendingrainbow.org - Noah's Never Ending Rainbow. The mission of Noah's Never Ending Rainbow is to educate, advocate, raise public awareness, promote strategic alliances and assist families who have children with Trisomy and related chromosome disorders.
http://www.trisomy.org/ - Support Organization for Trisomy 18, 13 and related disorders is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and related chromosomal disorders. Support is provided during prenatal diagnosis, the child’s life and after the child’s passing. SOFT is committed to respect a family’s personal decision – in alliance with a parent / professional partnership.
www.trisomy18.org - Trisomy 18 Foundation's mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring worldwide community for affected families.