Parents and families of children with Down syndrome have a wealth of education and support to draw on. Those lucky enough to live in an area with an active patient advocacy group have even more. And national groups and initiatives have made many resources available for free, either online or by phone or mail.Many parents looking for information and support for Down syndrome start with the National Down Syndrome Society or the National Down Syndrome Congress. Both are national (United States) organizations with many resources for families and clinicians who want to learn more about Down syndrome and/or find support. NDSS also has a helpful local support map to help families find groups in their area. For those outside the US, Down Syndrome International is a good place to start.
The National Center for Prenatal and Postnatal Resources is also a good resource for quality information about life with Down syndrome. Expectant parents can find good information about all options in their Lettercase booklets. And their Down Syndrome Pregnancy books have great information for those planning a birth, experiencing a loss, or supporting pregnant loved ones.
Families who are just beginning to explore life with Down syndrome can find online resources at these and many other sites. However, local groups are often the best place to start, and can connect families with printed information and personal mentoring.
The PREPARE Study 