National Down Syndrome Organizations in the U.S.

There are four national Down syndrome organizations in the United States: Global Down Syndrome Foundation, National Down Syndrome Congress, National Down Syndrome Society, and Down Syndrome Affiliates in Action.


Global Down Syndrome Foundation

Global Down Syndrome Foundation

The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.


National Down Syndrome Congress

The National Down Syndrome Congress (“NDSC”) provides information, advocacy and support for all aspects of  the lives of  individuals with Down syndrome. The organization was formed in 1973 and works to ensure equal rights and opportunities for people with Down syndrome, promotes education, provides public policy leadership, and encourages research. Every year, the NDSC organizes a national convention with approximately 2,500 to 3,000 attendees. The convention attracts nationally and internationally renowned Down syndrome experts and hundreds of families. A key focus of the NDSC is developing self-advocate leadership through their programs and their national awareness campaign “We’re More Alike Than Different.” NDSC has more than 250 affiliates, mostly comprised of local Down syndrome organizations.

To learn more about NDSC please visit http://www.ndsccenter.org


National Down Syndrome Society

Since 1979, the National Down Syndrome Society (“NDSS”) has worked to promote the value, acceptance and inclusion of people with Down syndrome. NDSS has about 350 affiliates nationwide. The NDSS National Policy Center works with Congress and federal agencies to protect the rights of people with Down syndrome, and educates individuals to advocate on local, state and national levels. The largest NDSS public awareness campaign is My Great Story, which ignites a new way of thinking about people with Down syndrome by sharing stories written by and about them. The National Buddy Walk Program includes over 250 walks. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

To learn more about NDSS please visit http://www.ndss.org/


Down Syndrome Affiliates in Action

Down Syndrome Affiliates in Action (DSAIA) is a national trade association composed of 70 affiliates mostly made up of local Down syndrome organizations from across the United States. DSAIA’s purpose is to serve their affiliates through collaboration, resource sharing, and networking. Benefits of membership include access to a resource repository, education and training webinars, brokered discount programs and discounted registration at their annual conference. DSAIA’s annual conference provides a valuable forum for local Down syndrome organizations to share programs and best practices with other local Down syndrome organizations.

To learn more about DSAIA please visit http://www.dsaia.org/


Please note there is an organization called the “National Association for Down Syndrome” and although it offers broad-based information, the organization offers support and advocacy specifically to those in the Chicago area. You can learn more about this organization under the “Local Down Syndrome Organizations – Illinois” section of this website.