Care Planning Guide for Families Expecting a Baby with Trisomy 18
Our Care Planning Guide is designed to support families who are currently expecting a baby with Trisomy 18 and the professionals who serve them. Inside the Care Planning Guide, you’ll find practical tools, compassionate insights, and supportive resources designed for both families and professionals navigating Trisomy 18. From understanding diagnosis to building a personalized care plan, this guide walks with you every step of the way.
The guide provides practical information on:
- Plain-language explanations of Trisomy 18 and available testing options.
- Practical tools for preparing medical appointments and asking the right questions.
- Sample care plan templates with prompts for families and professionals.
- Self-care strategies for caregivers and healthcare providers, plus a dedicated sibling support corner.
- Advocacy and resource connections to help navigate healthcare, financial, and emotional support.
A Guide to Finding Trisomy-Friendly Healthcare Teams
Families impacted by Trisomy 18 deserve compassionate, informed, and supportive care. This guide is designed to help you identify healthcare teams and facilities that honor your child’s life, respect your family’s values, and partner with you in every step of the journey.
Finding the right healthcare team for your child with Trisomy 18 can feel overwhelming, but you are not alone. The most important step is surrounding your family with providers who listen, respect your goals, and partner with you in care.
Essential Tools for Rare Disease Families
In our commitment to supporting families, we provide a curated list of external organizations and services offering tools, support networks, and specialized care for children and families impacted by Trisomy 18 and other rare or complex medical needs.
Please note:
- This list is not exhaustive; we encourage families to explore additional resources tailored to their unique circumstances.
- The E.WE Foundation does not endorse or hold formal affiliations with the individuals, organizations, or providers listed.
- Any engagement with these entities is at the discretion of each family, and The E.WE Foundation is not liable for outcomes resulting from such interactions.
Helpful Organizations & Support Networks
Advisory Committee on Heritable Disorders in Newborns and Children
Alabama Rare Disease Advisory Council
Children’s Rehabilitation Services
EveryLife Foundation for Rare Diseases
Genetic and Rare Diseases Information Center
Hugh Kaul Precision Medicine Institute
Living Well with Congenital Heart Defects
National Center for Advancing Translational Sciences
National Genetics Education and Family Support Center
National Maternal Mental Health Hotline
National Organization for Rare Disorders (NORD)
Rare Disease Legislative Advocates
Smith Family Clinic for Genomic Medicine
Southeast Regional Genetics Network (SERN)
UAB Undiagnosed Diseases Program (UDP)
USA Children’s & Women’s Hospital Bridge Program
Support for Families & Caregivers
Alabama Lifespan Respite Resource Network
Alabama Parent Education Center
Alabama State Department of Education
Child Welfare Information Gateway
Kerley’s Special Touch
Medicaid Disabled & Elderly Health Program
National Children’s Advocacy Center
National Society of Genetic Counselors
Support Organization for Trisomy (SOFT)
Support Organization for Trisomy 13/18 UK (SOFT UK)
UCP of Huntsville & Tennessee Valley
United Way 211 Community Resources
Downloadable Resource Library
Genetic Testing & Counseling
Educational & Reference Materials
Alabama Rare Disease Advisory Council Resource Manual
Barriers to Rare Disease Diagnosis, Care and Treatment in the U.S.
The National Economic Burden of Rare Disease Study Summary Report
Caregiver & Family Support Tools
Global Genes Rare Concierge – Patient Services
What Parents Say – Advancing Equity and Support
Young Adult Rare Representatives (YARR) Healthcare Guide
Financial Support & Literacy
Financial Literacy and Navigation in Rare Diseases
Seizure Awareness & Safety
Trisomy 18 Growth Charts
Trisomy 18 Head Circumference Chart
The E.WE Foundation 