History

Understanding a Down Syndrome Diagnosis has been available since 2008, and over 25,000 copies have been distributed nationwide during that time.

In 2009, the booklet was selected by the prestigious Joseph P. Kennedy Jr. Foundation First Call committee as the gold standard for prenatal information about Down syndrome.

Subsequently, Understanding a Down Syndrome Diagnosis was evaluated in 2010 by the Down Syndrome Consensus Group, initiated by the University of South Carolina’s Genetic Counseling Program and Center for Disability Resources, to promote shared understanding of health professional and advocacy community perspectives on Down syndrome. The current version was prepared with assistance from representatives of the following:

The American Congress of Obstetricians and Gynecologists (ACOG)
The American College of Medical Genetics and Genomics (ACMG)
The National Society of Genetic Counselors (NSGC)
The National Down Syndrome Congress (NDSC)
The National Down Syndrome Society (NDSS)

According to Janice Edwards, Clinical Professor and Director of USC’s Genetic Counseling Program, “This was a significant collaborative process with representatives of five national organizations contributing expert input to finish the booklet with accurate, balanced information and resources for parents with a prenatal diagnosis of Down syndrome.”

Publications/References

Understanding a Down Syndrome Diagnosis has been featured as a resource in the following journals and news articles: