MEDICAL
PROFESSIONALS
Welcome to SOFT
SOFT (Support Organization for Trisomy 18, 13, and Related Disorders) is dedicated to supporting families impacted by these complex conditions. We recognize the crucial role medical professionals play in guiding families through the challenges they face.
We offer resources to support your work, including information and a network of professionals. We believe in a collaborative approach that empowers families to make informed decisions.
Explore our website to learn more about how SOFT can support you and the families you serve.
Expectant Parent Book
Trisomy 18
This book is a resource to help you understand trisomy 18 and the unique details of pregnancy, delivery, and after-care. Let this guide empower you with accurate information and clarify the options you have going forward.
Includes a birth plan & after-care workbook to help prepare your family and your medical team
Trisomy 13
This book is a resource to help you understand trisomy 13 and the unique details of pregnancy, delivery, and after-care. Let this guide empower you with accurate information and clarify the options you have going forward.
Includes a birth plan & after-care workbook to help prepare your family and your medical team
Expectant Parent Resources
Trisomy 18 Fact Sheet
Download the fact sheet to gain a clear, concise overview of Trisomy 18, including its causes, diagnosis, common challenges, and the latest insights into survival and care options—perfect for parents, families, and professionals seeking reliable information.
Trisomy 13 Fact Sheet
Grab the fact sheet for an easy-to-read overview of Trisomy 13 (Patau syndrome)—what it is, how it’s diagnosed, common challenges, and what care and survival can look like. It’s a great resource for families, friends, and anyone wanting to learn more.
Growth Charts & Surgeries
Reports of over 3,000 parent-reported surgeries or procedures have been collected into a Surgery Registry and compiled into surgery tables made available on this website.
Professional Literature
SOFT has compiled a substantial library of professional literature about trisomy 18 and 13 which we are delighted to share with you
Create a Birth Plan
This will give you a way to communicate your needs and desires to your physician. It will help you know that your medical team is on the same page with you regarding your baby’s delivery and the level medical intervention you feel is best for your baby.
Prenatal Testing Resource Guide
Learn how different tests like the NIPT and amniocentesis can help you learn more about your baby’s health. Our guide explains everything in simple terms, including when these tests happen and what they involve.
Trisomy 18 Handbook for Families
When your Physician first tells you that your baby may have Trisomy 18 (Edward syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is, “What is trisomy 18”? This guidebook was written to answer some of those questions.
Trisomy 13 Handbook for Families
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.
Join Our Online Community
Learn All You Can
You are and will always be your child’s best advocate. Now is the time to arm yourself with knowledge. This website is a great place for that and below are a few recommendations of where to start.
Become a Member
Join SOFT and reach out to your State Contact to find other families in your area.
