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.
Camden, two years, Partial Trisomy 9p
Annabel, four years, Trisomy 18
July 2009: Debbie Bruns and Katie Foerster will present a session discussing family support at the July 2009 SOFT conference in Roanoke, VA. They will also present information about common medical conditions of children with subtypes of trisomy 9. Lea Robinson is assisting to compile this information.
The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase the
knowledge base on rare incidence trisomy conditions, and to make this
information available to families and interested educational, medical and
therapeutic professionals. Related outcomes will be the development of
appropriate services, advance treatment options, and supports during the
prenatal, newborn and subsequent developmental periods. Children affected
by T18, T13, and other rare syndromes possess unique needs requiring
education of those involved in their daily, educational and medical care.
A critical part of the TRIS project is dissemination of The TRIS Survey.
The survey will be used to collect and analyze data focusing on common
medical conditions, developmental milestones, therapeutic needs,
family-related concerns, and demographic data of families with a child
(living as well as deceased) with a rare trisomy condition.
Sponsors:
Support Organization for Trisomy 18, 13 and related disorders (SOFT)
Barb Van Herreweghe http://www.trisomy.org/
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 affected children and their families.