Posts Tagged ‘Patau Syndrome’
2022 Trisomy Awareness “SOFT” Wear Collection
March is Trisomy Awareness Month We are excited to release the 2022 Trisomy Awareness “SOFT” Wear Collection. Update: The special order of Trisomy Awareness Shirts is closed. You can still order directly from our Trisomy Awareness Store on Spri.ng. This year we are doing something different and having our shirts screen printed. Because of this…
Read More
Video – Perspectives on the Care and Management of Children with Trisomy 13 and 18 Syndromes
Intermountain Children’s Primary Hospital – Pediatric Grand Rounds John C. Carey, MD, MPH, FAAP, FACMG Emeritus ProfessorUniversity of Utah School of MedicinePediatric Genetics Primary Children’s Hospital Objectives: List the important manifestations and complications occurring in the 2 trisomy syndromes Identify the key issues surrounding the controversies in care of infants with trisomy 13 and 18
Read More
Lean on Us: An Overview and Review of TRIS Project Activities
From the SOFT 2021 Virtual Conference Lean on Us: An Overview and Review of TRIS Project ActivitiesDeborah A. Bruns PhD 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.
Read More
Aquatic Therapy
From the SOFT 2021 Virtual Conference. Aquatic Therapy – Briana Demars OTA
Read More
Spectrum of Epilepsy in Trisomy 18 Syndrome
From the SOFT 2021 Virtual Conference Professionals Panel. Spectrum of Epilepsy in Trisomy 18 SyndromeDr. Agatino Battaglia, MD, DPed, DNeurol
Read More
Newborn Airway Evaluation and Mandibular Distraction in Trisomy 18
From the SOFT 2021 Virtual Conference Professional Panel: Newborn Airway Evaluation and Mandibular Distraction in Trisomy 18Glenn E. Green, MD, Professor, Department of Otolaryngology-Head and Neck Surgery
Read More
Perspectives on the Care of Children with Trisomy 18/13 – 2021 Version
From the SOFT 2021 Virtual Conference Professional Panel: 2021 Version of Perspectives on the Care of Children with Trisomy 18/13John C. Carey, MD, MPH, FAAP, FACMGG, Professor Emeritus, University of Utah
Read More
Trisomy 18/13 – The Basics – 2021 Version
From the SOFT 2021 Virtual Conference: 2021 Version of Trisomy 18/13 – The BasicsJohn C. Carey, MD, MPH, FAAP, FACMGG, Professor Emeritus, University of Utah
Read More
Journey Hoffman
“Journey is not and never will be a diagnosis, she is Journey, and she has her own story to be written by the hand of God.” Theodore Roosevelt wrote, “Never throughout history has a man who lived a life of ease left a name worth remembering.” Journey Love’s name was chosen long before we knew…
Read More
Video: Routine Health Care for Children with Trisomy 13
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 13? Dr. John Carey, MD and medical advisor for SOFT discusses current medical standards and expectations for children living with Trisomy 18 or Edwards Syndrome. From the 2013 TrisomyTalk.com series of medical webinars. Dr. John Carey, MD and…
Read More
You must be logged in to post a comment.