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

National Down Syndrome Society
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Measure promotes new treatments and encourages lifelong, specialized care

WASHINGTON, D.C. (Feb. 12, 2017) - The National Down Syndrome Society (NDSS), the leading human rights organization for all individuals with Down syndrome, today commended Representatives Gus Bilirakis (R-FL) and Adam Schiff (D-CA) for reintroducing legislation to expand research into congenital heart defect (CHD) treatments and encourage lifelong, specialized care for patients.

“Approximately one-half of all babies born with Down syndrome have congenital heart disease,” noted NDSS President Sara Hart Weir. “We are grateful for the leadership of Representatives Bilirakis and Schiff for championing this legislation, which will improve the health and quality of life for people with Down syndrome so that they may realize their life aspirations.”

The legislation, known as the Congenital Heart Futures Reauthorization Act of 2017, expands on a program first authorized as part of the Affordable Care Act of 2010 to improve the nation’s surveillance, research, and education efforts to fight CHD. In addition to ensuring sufficient funding for life-long research, the legislation will enhance the Center for Disease Control and Prevention’s surveillance of CHD, and promote National Institute of Health (NIH) research, public outreach, and education.

Although common congenital heart defects can be repaired with a limited risk of death, research shows that CHD in people with Down syndrome during the early years of life has the potential to significantly affect cognitive function and overall health status later in life, and necessitates extensive medical intervention. In fact, according to an NIH health research plan on Down syndrome, neurodevelopmental outcomes among children with Down syndrome are known to be worse than those of typically developing children who have the same heart defects.

“We encourage Congress to continue making CHD research and surveillance a national priority, Weir stated. “Because CHD is so prevalent in people with Down syndrome, NDSS believes that increased federal research focused on diagnosis, treatment, prevention and long-term outcomes of CHD in the Down syndrome population could potentially provide important insights into the cause or causes of the disease and intervention strategies for the broader population.”

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