The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

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. 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.

  2. Noninvasive Prenatal Tests (NIPTs)

    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. With the lack of Food and Drug Administration (FDA) control on NIPTs, there is concern that women are making life-changing decisions too early in a pregnancy based on these unregulated tests. No NIPT is 100% accurate, no matter who manufactures the test. With an FDA approval of an NIPT for Down syndrome, the family can rest assured they are receiving test results that are consistent in performance and information.

  3. 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.

  4. 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.

  5. Down Syndrome Research Funding

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

  6. 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.

  7. 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
  • My Great Story
  • NDSS DS-Ambassadors