BLOGS
The Rare Disease Connection: Interview with Dr. John Carey & Hope for Trisomy
English Language Podcast Spanish language Podcast
The Care Book (English, Spanish, Portuguese)
Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and...
April S – Trisomy 18
April's Story "We love her already and will not stop trying to find someone, some facility, who will believe with us!!!" April S, Trisomy 18 and CDH, 02/25/2019, Live 7 weeks, Orrtanna, PA So yay!! We were so excited!!! We're pregnant with baby 11!!!! Going in for an...
2018 ACMG Conference
SOFT was represented at the 2018 ACMG (American College of Medical Genetics) Conference held April 10- 14, 2018 in Charlotte, NC. SOFT Attendee: Dr John C Carey, Medical Geneticist and Pediatrician, Primary Children’s, SLC, UT - SOFT Medical Advisor SOFT member...
Lives Worth Living
Fallible Truths: Presentation made by Dr. McCaffrey View & Download this presentation. Fallible TruthsDownload
Diana Victoria Rodriguez
Diana Victoria’s Story “These babies are very special, and we are very special for having them.” Diana Victoria Rodriguez, 07/21/2007 to 08/07/2007, Trisomy 13, Plantation, FL Hello, my name is Nora-Lee Rodriguez, my husband Nicolas and I are the proud parents of...
2015 ACMG Meeting
SOFT was among the 150 exhibits at the American Clinical Genetics Meeting sponsored by the American College of Medical Genetics and Genomes in Salt Lake City, Utah March 25- 27th, 2015. Over 2,200 professionals attended the meeting, which consisted of over 40...
What Shall We Do Now?
For parents of infants newly diagnosed with Trisomy 18 or 13 The Need for Information at Diagnosis For parents facing decision-making following a prenatal diagnosis or diagnosis following the birth of a son or daughter with trisomy 18 or trisomy 13, information is...
2014 ACMG MEETING
Mark, Faye and Morghan (trisomy 18) represented SOFT at the 2014 American College of Medical Genetics and Genomics (ACMG) in Nashville, TN. “I was told by several people we had the best booth because we had MORGHAN. A picture may be worth a thousand...
TRIS Project – Trisomy 18
Giving a Face to Trisomy 18: Debbie Elaborates on this Rare Condition Ava, Akaiya, and Annabelle, three little girls with full trisomy 18. The terms “incompatible with life” and “lethal anomaly” are often used to describe trisomy 18 (t18). Would-be parents are...