School of Education
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.
- TRIS Survey
- TRIS Project Update
The College of Education and Human Services (COEHS) at Southern Illinois University Carbondale publishes an online magazine, Journeys. Articles highlight student and faculty achievements, events and the like. The May 2014 issue includes an article featuring Emily Campbell, Undergraduate Assistant with the TRIS project (fall 2012-spring 2014). The issue also has an interview with Deborah Bruns, Principal Investigator of the TRIS project.
The TRIS project will post a case study each month during 2014 to highlight long-term survivors with various trisomy conditions. Check our Case Studies page for a complete listing.
Each case study will include birth information, medical conditions and their resolution and developmental milestones. There will also be a newborn photo along with a current photo of each child. All case studies can be downloaded in PDF format. Please share them with families and medical professionals.
International Trisomy Alliance
(Issue 1, December 2013). The International Trisomy Alliance is a volunteer, not-for-profit
organization focusing on trisomy 13 and trisomy 18. The mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate information and resources, and to be a mechanism for sharing between groups.
- Support Organization for Trisomy 18, 13 and Related Disorders (SOFT USA)
- Living with Trisomy: TRISOMY SUPPORT
- Living with Trisomy 13
- Rowan Tree Foundation
- Trisomy 9
- Support Organization for Trisomy 13/18 (SOFT) UK
- International Trisomy Alliance
- The E.WE Foundation – A Healthcare Advocacy Organization