The nationally recommended book for new and expectant parents learning about Down syndrome, Understanding a Down Syndrome Diagnosis, from the Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute, has been recently updated with unprecedented collaboration from leading experts across the nation to improve the diagnosis experience for families.
The review group included representatives of the Genetic Conditions Consensus Group, including representatives from the American College of Obstetricians and Gynecologists, the American Academy of Pediatrics, the American College of Medical Genetics and Genomics, the National Society of Genetic Counselors, the Association of University Centers on Disabilities, the National Down Syndrome Society, Down Syndrome Education International, and the Down Syndrome Diagnosis Network. These experts donated their time and expertise toward this update, which clearly reflects major developments in the past 5 years.
According to Stephanie Meredith, the Director of the Lettercase National Center for Prenatal and Postnatal Resources, “This major revision reflects the commitment of leading experts from medical and advocacy to improve the diagnosis experience for families during a time that can overwhelming. These resources show authentic photos of life with the condition and also provide the latest information about Down syndrome and available services and supports.”
All revisions have been approved by the representatives of the medical, disability, and Down syndrome advocacy groups who participated in the consensus group. The updates include references to new studies about life and health outcomes, more information about prenatal testing and pregnancy management as discussed in the national medical guidelines, updated national and international resources, and new information about supports and services.
Updates will be available in multiple languages in the coming months thanks to a generous grant from the Joseph P. Kennedy, Jr. Foundation. In addition, a French-Canadian version will be added to the available languages.
The books are available for free online, and medical providers and expectant parents can request a free book. All proceeds from multiple book purchases go toward supporting this non-profit university program.