Support Organizations
Specialized Fetal Care, Advocacy, & Clinical Resources
American Academy of Pediatrics (AAP) Guidance for Caring for Patients with Trisomy 13 & 18
This official AAP guidance assists clinicians and families in navigating complex diagnoses of Trisomy 13 and 18. The report highlights emerging data on long-term survival and advocates for collaborative care tailored to a family’s personal values.
Advice After Receiving a Trisomy 13 or 18 Diagnosis
A compassionate guide from SOFT UK that offers comforting, community-led wisdom for families navigating the initial shock of a Trisomy 13 or 18 diagnosis.
Children’s Hospital of Philadelphia (CHOP) – Center for Fetal Diagnosis and Treatment
A world-renowned leader in pediatric medicine and advanced fetal surgery, providing comprehensive care for complex prenatal conditions and birth defects.
Council of Parent Attorneys and Advocates
An independent organization that empowers parents to work as equal partners with school districts to secure high-quality educational services for children with disabilities. COPAA provides an unparalleled peer network, legal resources, and professional advocacy training to ensure every student can thrive.
East Carolina University (ECU) – Maternal-Fetal Medicine
A leading clinical program providing comprehensive high-risk obstetric care, detailed diagnostic fetal imaging, and genetic testing for complex pregnancies.
Find A Prenatal Genetic Counselor
A national directory to help families locate genetic counseling professionals who can guide them through complex testing options and explain prenatal results.
Board-certified neonatologist Dr. Robin Pierucci joins the Bioethics Babe podcast to expose the hidden medical and cultural pressures families face following a prenatal diagnosis. Drawing from decades of NICU experience, she explores medical uncertainty, life expectancy predictions, and how parents can separate objective medical facts from quality-of-life assumptions to make truly informed choices.
Helps families understand a fetal diagnosis, consider options, and work with their medical team from an informed place of clarity and confidence.
A premier pediatric health system providing exceptional pediatric specialized care, clinical resources, and compassionate support for families navigating childhood illnesses and complex diagnoses.
Old Dominion University (ODU) – Fetal Cardiovascular Center
A highly specialized center dedicated to the early detection, precise diagnosis, and coordinated management of complex fetal heart conditions.
A nonprofit initiative dedicated to improving the prenatal detection of congenital heart disease through specialized clinician training and evidence-based screening techniques for sonographers.
UT Southwestern Medical Center – Maternal-Fetal Medicine
A nationally recognized university health system offering expert high-risk pregnancy care, advanced in-utero procedures, and seamless coordination with top pediatric specialists.
Grief Support Organizations
Provides a safe place for children ages 3-18 and their families to cope with the death of a loved one and share their grief with others.
Provides grief support in a safe place where children, teens, young adults, and their families can share their experiences before and after a death. Provides support and training locally, nationally, and internationally to individuals and organizations seeking to assist children who are grieving.
Financial Bereavement Support
Supports bereaved families, helping fund meaningful memorial stones for babies and sharing hope for tomorrow.
Provides funeral floral arrangements at no cost to families affected by infant loss.
Seeks to compassionately lift a financial burden from families who have lost a child, and offer comprehensive bereavement care in the form of grief support groups and peer companions.
Wells Clayton Whitworth Foundation (WCWMF)
Helps North Alabama families who are experiencing the unimaginable loss of an infant by covering the unexpected cost of burial and grief counseling.
Remembrance Support
Dedicated to providing perinatal families anticipating a limited life or currently experiencing a loss with the resources to make a lifetime of memories.
Provides families with a unique, tangible keepsake by transforming a mother’s breastmilk, the baby’s ashes, or locks of hair into a beautiful, solid “stone” that is then set into jewelry (rings, pendants, etc.). This offers a meaningful way for a mother to wear a physical symbol of her journey with her child.
Introduces remembrance photography to parents experiencing the loss of a baby by providing a free gift of professional portraiture to capture their brief time together.
Provides tangible and emotional support for families who experience the loss of a pregnancy, infant, or child by offering meaningful keepsakes, gifts of remembrance, and connection with other bereaved families.
Advocacy and Life-Limiting Diagnoses Support
Supports families who have chosen to carry a child with a life-limiting diagnosis.
AXYS, also known as the Association for X and Y Chromosome Variations, is a nonprofit advocacy, education, and support organization for individuals with X and Y chromosome variations and their families.
Dedicated to equipping organizations and professionals to support parents carrying to term following a life-limiting prenatal diagnosis.
Provides links and information specifically focused on creating birth plans for babies with life-limiting diagnoses.
Extra To Love stands beside families impacted by Edwards and Patau Syndromes, offering encouragement, resources, and financial support so no one feels alone in their trisomy journey.
Provides resources and support for families experiencing pregnancy or infant loss through a texting “hope-line”, support groups, weekend retreats, and coaching for both individuals and couples. They also host the Colorado Wave of Light and have published Safe & Loved: A Creative Comfort Book for Kids After the Loss of a Sibling.
Isaiah’s Promise was founded in 1995 to provide families, who decide to carry to term after receiving a severe or fatal prenatal diagnosis, support, information, friendship and hope.
Devoted to providing hope, comfort, and financial support to families with children battling congenital heart defects (CHDs).
As the nation’s clearinghouse & comprehensive training center for sharing accurate, balanced, and up-to-date information about genetic conditions, Lettercase leads the effort to make sure all expectant parent and providers have the resources and support they need at the moment of diagnosis.
Walks with Mamas carrying to term despite a prenatal diagnosis. With fierce love and tender care, Mama Bear Care changes stories from heartache to hope.
Perinatal Hospice and Palliative Care
Information on perinatal hospice, palliative care, and memory-making options for families who receive a life-limiting diagnosis.
Sad Dads Club helps fellow bereaved fathers navigate life after loss by nurturing a supportive community and providing access to mental health services.
Dedicated to walking alongside families receiving a life-limiting diagnosis in pregnancy or experiencing the loss of a baby at any gestation, providing compassionate care through comprehensive perinatal hospice care, bereavement doula support, and remembrance materials.
Support Organization for Trisomy
Provides information and resources
on Trisomy 18, 13, and related
chromosomal disorders, as well as
opportunities for connection and
community building. Empowers families to navigate their journey with confidence and advocacy for their needs.
Postpartum Mental & Spiritual Support
Provides a reliable, biblically-grounded place to find hope after loss for mothers who have experienced pregnancy and infant loss.
Offers free Biblically-based retreats where bereaved parents connect with other moms and dads who truly understand the unique experience of child loss.
Trisomy-Specific Research & Support Organizations
Provides support and information to anyone diagnosed with a rare chromosome or gene mutation disorder. Additionally, CDO actively promotes research and a positive community understanding of all chromosome disorders.
An international organization that unites families, provides specialized educational resources, and funds the world’s leading clinical research center dedicated to chromosome 18 conditions, helping parents navigate their child’s unique diagnosis with confidence.
A family-led advocacy network that partners with healthcare systems to promote equitable, evidence-based, and individualized medical care for children with Trisomy 18.
An Alabama-based global network providing care coordination, resources, and healthcare education to support families and medical professionals navigating Trisomy 18.
For the Love of Harley Foundation
Partners with medical professionals and healthcare institutions to improve access to specialized care, advance clinical research, and support families navigating a Trisomy 18 journey.
Empowers families facing a rare trisomy diagnosis by funding vital medical research, promoting parental advocacy for treatment options, and providing direct support, including equipment grants for children.
Tracking Rare Incidence Syndromes (TRIS) Project
A research initiative that tracks developmental milestones and medical outcomes for rare trisomy conditions to provide families and clinicians with accurate, real-world data.
A research-driven registry at Boston Children’s Hospital that collects vital data on children with Trisomy 13 and 18 to better understand their medical needs. By documenting developmental milestones and health outcomes, this project seeks to empower families and clinicians with the evidence-based information needed to optimize care.
A national philanthropic initiative that funds vital research, specialized pediatric care centers, and support networks to improve clinical outcomes and compassionate guidance for the trisomy community.
contact: fortythreebutterflies@gmail.com