For many years, families were in the dark about Trisomy 18 and what it meant for their child when learning of the diagnosis for the first time in pregnancy or shortly after birth, but we’ve worked tirelessly to answer their questions and companion them on this difficult journey. Today we are the leading resource for accurate, balanced and up-to-date information for newly-diagnosed patients and their families, as well as health professionals and researchers. If you or someone you love is impacted by a diagnosis of Trisomy 18 or a related disorder, we offer easy-to-understand materials to help you on your medical journey. If you are a doctor or other healthcare provider, we have resources for your office, patient education tools and up-to-date management overviews. If you are a researcher, we offer vehicles to help you to advance knowledge on Trisomy 18 and related disorders on a cellular level that could translate to treatments improving survival in the first year of life and preventing the meiotic errors causing Trisomy 18. Please explore the links below to learn more about our resources.
For Parents and Family
If you or your family has recently learned of a Trisomy 18 diagnosis for a much-wanted infant or are facing new challenges, you have many, many questions. We have resources and answers to help you in your medical journey and to connect you with other families in our community who have faced these same challenges.
For Health Professionals
We offer patient education tools and treatment guidelines, especially for doctors who don’t see a lot of pregnancies or patients with Trisomy 18 syndrome and related disorders. In addition, we provide patient-centered resources to complement your relation-based medical services and help keep you connected to the most up-to-date clinical research in this fast changing area of patient care.
Your research is critical to creating a brighter future for expectant mothers and fathers and for their babies impacted by Trisomy 18 and related disorders. We are here as a resource for you, whether you are a basic or clinical scientist conducting research to reduce the life-threatening and quality of life challenges facing patients impacted by Trisomy 18 syndrome and related disorders.