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General Information

Aging and Down Syndrome (NDSS)

The National Down Syndrome Society (NDSS) is pleased to announce the release of its new publication, Aging and Down Syndrome: A Health & Well-Being Guidebook.

The goals for this guidebook are to provide guidance, education, and support to families and caregivers of older adults with Down syndrome and to prepare them for medical issues commonly encountered in adulthood.

Download Aging and Down Syndrome: A Health & Well-Being Guidebook here.

What is Down syndrome?

Dear Parents:

We understand the mixed emotions you may be feeling at this time. We would like to share our experiences with you. We hope you will find them useful.

We realize that each story is as unique as each child and family; however, we hope it will become apparent how precious our children are to us and how proud we are of them.

We invite you to join the circle and get to know us! With our very best wishes for you and your baby...

We can mail you a New Parents Package. Contact us at 1-800-883-5608 to order a package.


How to Talk About Down syndrome

Language Guidelines

The correct spelling is Down syndrome. There is no apostrophe “s” (Down). The reason is because in English, adding an apostrophe indicates ownership is involved. Dr. John Langdon Down provided the first formal description of the syndrome, but he did not have Down syndrome and thus no possessive is used. Also, the “s” in syndrome is not capitalized. Other countries may continue to use “Down’s.”


Types of Down syndrome

There are three types of chromosomal patterns that result in Down syndrome. They are: trisomy 21, translocation and mosaicism. A blood test is required for chromosome analysis and the type of pattern would be determined at that time.


Characteristics and Health Concerns for People with Down Syndrome


There are several physical characteristics that are more common for babies with Down syndrome. They may include chubby cheeks, large, round eyes, larger tongue, smaller limbs and smaller body frame.