National Health Council — Voluntary Health Agency Guide

National Down Syndrome Society

The National Down Syndrome Society (NDSS) is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families.

Education: With model programs, an award-winning Web site, national conferences, Information and Referral Center and more, NDSS provides targeted, in-depth information that meets the diverse needs of its constituents.

Research: The Society hosts international research conferences and is one of the largest private funders of Down syndrome research in the world.

Advocacy: In cooperation with its 170 affiliate groups and with its National Policy Center, NDSS influences important local and federal legislation, establishes October as National Down Syndrome Awareness Month, organizes the Buddy Walk — the nation’s largest advocacy walk for Down syndrome — and much more.

About the condition(s):

Down syndrome is a genetic condition that occurs in one of every 800 to 1,000 births. It affects people of all ages, races and economic levels and is the most frequently occurring chromosomal abnormality. It occurs when there are three, rather than two, copies of chromosome 21 present in every cell of the body. Instead of the usual 46 chromosomes, a person with Down syndrome has 47. It is this additional genetic material that alters the course of development and causes the characteristics associated with the syndrome. Down syndrome affects over 350,000 people in the United States alone. Recent advances in our understanding of Down syndrome have resulted in dramatic improvements in the life span and potential of those who are affected.