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NIH The Down Syndrome Consortium Home

Contact Information


Welcome to the Down Syndrome Consortium

In 2011, the National Institutes of Health (NIH) joined with organizations interested in Down syndrome to form the Down Syndrome Consortium. The goal of this effort is to encourage the exchange of information about Down syndrome research, support, and care among all of the groups in the Consortium.

The Consortium meets two to three times each year to discuss research findings and progress toward achieving research, management, infrastructure, and other goals set out by the NIH after consultation with national organizations and agencies interested in Down syndrome. Visit About the Consortium for more information about these goals.

New NIH-Wide Initiative

NICHD is pleased to be part of INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE), an NIH-wide initiative that launched in June 2018 in support of a Congressional directive in the fiscal year 2018 Omnibus Appropriations. The project aims to understand critical health and quality-of-life needs for individuals with Down syndrome, with the aim of yielding scientific discoveries to improve the health, well-being, and neurodevelopment of individuals with Down syndrome, as well as their risk and resilience common diseases that they share with individuals who do not have Down syndrome. INCLUDE will investigate conditions that affect individuals with Down syndrome and the general population, such as Alzheimer’s disease/dementia, autism, cataracts, celiac disease, congenital heart disease, and diabetes. Check back for more details.

What is DS-Connect®: The Down Syndrome Registry?


A transcript of the video is available at

If you have a question about the Consortium or its activities, email it to: