Throughout our history, the National Down Syndrome Society has been at the forefront of Down syndrome research. Through a variety of research programs and activities, now focusing on advocacy for Down syndrome research on the federal level, NDSS has played a major role in advancing knowledge about Down syndrome in an effort to ensure that people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

Additional Resources:




  • American Association on Intellectual and Developmental Disability
    Promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.
  • Brain and Tissue Bank for Developmental Disorders – University of Maryland
    The objective of this human tissue repository is to systematically collect, store, and distribute brain and other tissues for research dedicated to the improved understanding, care and treatment of individuals with developmental disorders.
    A registry and results database of federally and privately supported clinical trials conducted in the United States and around the world, giving information about a trial’s purpose, who may participate, locations, and phone numbers for more details
  • Down Syndrome Research Foundation
    Provides educational programs and services grounded in foundational research
  • Global Down Syndrome Foundation
    Global Down Syndrom Foundation raises funds for the Linda Crnic Institute for Down Syndrome to underwrite critical research benefiting people with Down syndrome.  Two of the most important grants are the Crnic Grand Challenge Grants and the Alzheimer’s disease-Down syndrome innovation grants co-funded with the Alzheimer’s Association.
  • National Institute of Child Health and Human Development (NICHD)
    Supports the research of intellectual and developmental disabilities and works to improve the health of individuals and communities
  • National Institutes of Health
    The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency—making important discoveries that improve health and save lives.
  • PubMed Central
    PMC is a free full-text archive of biomedical and life sciences journal literature at the US National Institutes of Health’s National Library of Medicine
  • Research Match
    ResearchMatch aims to serve as an effective, useful and complementary recruitment tool that will help connect willing volunteers with researchers who are searching for appropriate volunteers to be placed in their research studies (not just clinical trials)