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Find resources and information about Trisomy 18, Trisomy 13, Related Disorders, Surgeries and more.

Growth Charts & Surgeries

by Jack and Dianna Aubele | Dec 17, 2019 | Medical Professionals, Parenting A Child, Related Disorders, Resources, Surgery, Trisomy 13, Trisomy 18

Bonnie Baty, PhD, Genetic Counselor at the University of Utah, in collaboration with SOFT, created the first, and still only, charts with growth curves for infants and children with trisomy 18 and...

The Rare Disease Connection: Interview with Dr. John Carey & Hope for Trisomy

by Frank B | Nov 10, 2019 | Medical Professionals, Parenting A Child, Resources, Surgery | Charts & Tables, statistics, Surgeries by Category, Surgery

English Language Podcast Spanish language Podcast

The Care Book (English, Spanish, Portuguese)

by SOFT | Dec 17, 2018 | Expecting A Child, Medical Professionals, Parenting A Child, Publications, Resources, Surgery, Trisomy 13, Trisomy 18, Trisomy 9 | care book, Care Plan, Expecting a Child, Parenting, Trisomy 13, Trisomy 18

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...

2018 ACMG Conference

by Terre Krotzer | Apr 15, 2018 | Blog, News | ACMG, genetic conference, Related Disorders, Trisomy 13, Trisomy 18, Trisomy 9

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,...

Lives Worth Living

by Jack and Dianna Aubele | Aug 9, 2017 | Expecting A Child, Medical Professionals, Parenting A Child, Trisomy 13, Trisomy 18, Trisomy 9 | Medical Pros, Presentation, Survival, Trisomy 13, Trisomy 18

Fallible Truths: Presentation made by Dr. McCaffrey View & Download this presentation. Fallible TruthsDownload

What Shall We Do Now?

by Lisa Arturo | Mar 27, 2014 | Expecting A Child, Medical Professionals, Parenting A Child, Related Disorders, Resources, Trisomy 13, Trisomy 18 | decision making, experiences of other, living children, pre-natal diagnosis, quality of life, socialization, statistics, what do I do now, what to expect

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...

TRIS Project – Trisomy 18

by Success Engine | May 20, 2013 | Trisomy 18 | 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...

TRIS Project – Trisomy 13

by Jack and Dianna Aubele | May 20, 2013 | Trisomy 13 | TRIS Project, Trisomy 13

What is Trisomy 13? It is difficult to find the accurate prevalence data about trisomy 13 (t13). Some studies look to hospital registries while others focus on infants born in a specific state or...

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