The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017

Improving Health Outcomes & Quality of Life for People with Down Syndrome

Featured ImageNDSS engages in legislative and regulatory advocacy in an effort to improve the health and quality of life for people with Down syndrome. This includes creating and maximizing research opportunities, improving health outcomes, increasing access to quality care and developing new therapies and treatments for all people with Down syndrome.

  1. Kevin and Avonte's Law

    Kevin and Avonte’s Law, named for two boys with autism who drowned after wandering, will reauthorize the expired Missing Alzheimer’s Disease Patient Alter Program, and include new provisions to support people with autism and other intellectual/developmental disabilities who wander.

  2. Advancing Care for Exceptional (ACE) Kids Act of 2015

    The Advancing Care for Exceptional (ACE) Kids Act of 2015 (S 298 and HR 546) is bipartisan legislation to improve care for children with medical complexity on Medicaid, while helping to contain costs.

  3. Noninvasive Prenatal Tests (NIPTs) / Accurate Education for Prenatal Screenings Act

    Women and families deserve as much information as possible when considering and/or undergoing prenatal testing as an option. The issue of unregulated Noninvasive Prenatal Tests (NIPTs) for Down syndrome is a serious concern for the Down syndrome community.

  4. Biomedical Innovation

    NDSS strives to ensure that individuals with Down syndrome have access to the best possible treatments, diagnostics and therapies for improving their quality of life. NDSS strongly supports legislation to accelerate the discovery, development and delivery of life saving and life improving therapies, which benefit patients with life-threatening diseases for which a cure is being sought, as well as people with conditions like Down syndrome.

  5. NDSS Pro-Information State Law Toolkit

    NDSS, along with MDSC, has launched a toolkit for Down syndrome organizations, GACs, etc., on Down syndrome prenatal and postnatal testing information model legislation.

  6. Down Syndrome Research Funding

    NDSS works to create, leverage and maximize research funding opportunities across the federal government.

  7. NDSS Research Innovation & Discovery Fund

    In 2013, NDSS established a restricted fund, the Down Syndrome Research Innovation & Discovery Fund, to support research and clinical infrastructure needs for the Down syndrome scientific and research community.

  8. NIH Down Syndrome Consortium

    In September 2011, the National Institutes of Health joined with NDSS and other organizations interested in Down syndrome to form a consortium to foster the exchange of information on biomedical and biobehavioral research on the chromosomal condition.

  • Buddy Walk
  • NDSS Yourway
  • NDSS DS-Ambassadors