"We felt so much support from our doctor and the geneticist who spoke with us." Troy, Mom to Tobin
how to deliver a diagnosis
At DSDN, our goal is to provide medical providers the tools and resources needed to discuss Down syndrome in a way that is supportive and educational. Whether you are delivering a prenatal diagnosis, discussing possible ultrasound markers or informing parents that their newborn is showing signs of Trisomy 21, we want to help ensure your patient leaves the conversation feeling informed and respected.
Additionally, we encourage all health systems to make follow up surveys a routine part of a Down syndrome diagnosis. Please contact us for assistance in implementing your own feedback program today.
resources we provide
The Joseph P. Kennedy, Jr. Foundation's Understanding a Down Syndrome Diagnosis booklet, printed and distributed by Lettercase, is part of the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky's Human Development Institute
"Delivering a Down Syndrome Diagnosis," a bi-fold that includes a summary of peer-reviewed best practices for clinicians delivering a prenatal diagnosis
"How to Deliver a Postnatal Diagnosis of Down syndrome" - A compilation of professional recommendations for delivering a birth diagnosis of Down syndrome. View PDF Version HERE.
Resources from State and local Down syndrome associations and networks
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prenatal screening pamphlet
Helping your patients understand testing before it is done, can be an effective way to understand your patient's values as well as educate them on potential genetic conditions. Understanding Prenatal Screening and Testing for Chromosome Conditions, created by Lettercase, is specifically for patients who are being offered testing and want more information about the different kinds of testing and the different conditions for which they are being tested.
This pamphlet was prepared with assistance from representatives of The National Society of Genetic Counselors with funding provided by the U.S. Administration on Intellectual and Developmental Disabilities (AIDD), though no official endorsement from AIDD should be inferred.