The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
[email protected] 

Health Care & Research

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. Affordable Care Act (ACA)

    Congress is currently considering repealing the Affordable Care Act (ACA) and offering a replacement. NDSS is in discussions with legislators to urge them to continue to address and strengthen provisions that benefit people with Down syndrome, as well as to enact additional reforms to promote independence and self-determination for individuals with Down syndrome.

  2. Medicaid Reform

    Congress is considering various proposals that would make sweeping changes to Medicaid, including moving to a block grant or per capita cap funding system. NDSS recognizes the vital importance of Medicaid services to the Down syndrome community, and is advocating for the inclusion of certain key principles in all reforms.

  3. 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. Legislatively, NDSS supports the Accurate Education for Prenatal Screenings Act that would require the CDC to create and maintain education programs for patients and health care providers.

  4. Pro-Information Laws & Toolkit

    NDSS is a pro-information organization, and one of our key legislative priorities is ensuring that all women and families receive the most accurate, up-to-date, evidence-based information about Down syndrome when receiving a prenatal or postnatal diagnosis. As such, NDSS supports laws that require health care providers to provide quality information to anyone receiving a diagnosis of Down syndrome. Along with the Massachusetts Down Syndrome Congress (MDSC), NDSS has created a toolkit to help those who are interested in working toward the passage of a Down syndrome pro-information bill in their state.

  5. Biomedical Innovation & Research

    NDSS advocates to accelerate the discovery, development and delivery of life saving and life improving therapies for people with Down syndrome. Our efforts include supporting legislation as well as participating in key partnerships such as the NIH Down Syndrome Consortium.

  6. Nondiscrimination in Organ Transplantation Laws & Toolkit

    Despite federal protection, people with disabilities still do not receive equal consideration for organ transplants. Therefore, NDSS supports the passage of state laws that prohibit discrimination against people with disabilities in organ transplantation.

  7. Other Legislation

    NDSS advocates for laws and policies that would improve health care and advance research to benefit people with Down syndrome.

  • Buddy Walk
  • NDSS Yourway
  • NDSS DS-Ambassadors