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…

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If you get any two or more parents of children with Trisomy together the conversation will inevitably turn to the subject of constipation. Constipation is one of the most common health issues that families of a child with a diagnosis of Trisomy 18, 13 or other related disorder face. Managing your child’s bowels becomes a…

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Membership – by Diagnosis (MOS = Mosaic) Trisomy_18 Trisomy_18MOS Trisomy_13 Trisomy_13MOS Trisomy_9 Trisomy_9MOS Other Total Membership – by Member Type Total Supporter Medical_Prof Families Editor Admin Others Note:  Some Medical Professionals have children with trisomy so the “Families” count will not equal the Total Count in the first display.

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Provision of information and links does not constitute SOFT USA’s endorsement of any group. The International Trisomy 18/13 Alliance (ITA) is a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively).   The mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate…

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I know we might not have known each other long. Maybe you’re a friendly cashier, or someone buying the same grapes as me at the grocery store. Maybe we’re taking turns on a machine at the gym, or we just met at a professional development opportunity. We make friendly banter, which I’m probably not enthused…

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What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 18? 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…

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Use the scrollbar at the end of the list to scroll to the right! Or place your cursor in any column name and left-click; then use your right/left arrow keys to scroll right or left! State_City Contact Family Family_Experience Email Phone

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How to Support a Parent in Grief Wisdom from Bereaved Parents of Children Diagnosed with a Syndrome “People told us that having him would be the hardest thing we ever did.  But they were wrong. The hardest part is not having him.”  Patricia Farmer, Joey, Trisomy 13 “If you are lucky enough to have not…

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When your physician first tells you that your baby may have trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is “What is trisomy 13?” This book was written to answer some of these questions, to share insights of parents of children with trisomy…

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