Reps. Gillen, Langworthy, Schrier Introduce Bipartisan Bill to Expand Rare Disease Screenings for Newborns

September 30, 2026 Press Release Newborn screenings identify an estimated 14,000 newborns each year with treatable conditions and are considered one of the most impactful public health tools. GARDEN CITY, NY — Congresswoman Laura Gillen (D-NY-04), alongside her colleagues Congressman Nick Langworthy (R-NY-23) and Congresswoman Kim Schrier (D-WA-8), introduced the bipartisan Surge to Save Newborns Act to provide states with federal funding and resources to conduct newborn screenings for rare health conditions on the national Recommended Uniform Screening Panel (RUSP). These screenings identify newborns at risk of serious and treatable rare health conditions to prevent irreversible brain damage, lifelong disability or even death. “Newborn screenings give families a critical opportunity to detect rare and deadly conditions in the first days of a child’s life,” said Rep. Gillen . “Catching rare illnesses and treating them early can be lifesaving and prevent costly, lifelong disabilities. I’m proud to partner with my colleagues on this bipartisan bill to ensure every state has the funding to provide proven, effective newborn screenings and give every child a fighting chance.” “One of our most sacred duties as a society is to protect our newborn babies. We already have the technological advancements to detect serious conditions—now we must do everything in our power to ensure that every single newborn has access to them,” said Rep. Langworthy. “Adding a condition to the federal recommended panel is a good first step, but we need to make sure that states have the resources to put the screenings into practice. This bill will literally save lives and help get these precious babies into treatment before it’s too late. We have to get this done.” “As a pediatrician, I’ve taken care of patients whose conditions were discovered early on their newborn screen,” said Rep. Schrier. “Because we had the resources to screen for these diseases, we were able to help babies right away and save lives. However, states often lack the resources to screen for each condition listed on the recommended panel, which puts our children at risk. I am proud to introduce this bipartisan legislation to ensure that newborns in Washington state and across the country are screened for all of these treatable conditions at birth.” The U.S. Department of Health and Human Services oversees the Recommended Uniform Screening Panel, a national list of rare conditions that experts advise states to include in newborn screening. It includes 40 core conditions with proven, effective screening and treatment options and 26 secondary conditions that may be identified through core screening or follow-up testing. Conditions are added to the RUSP upon rigorous, evidence-based evaluation and confirmation of an effective treatment option. The Surge to Save Newborns Act would: Provide dedicated funding to states: establish a federal grant program administered by the Secretary of Health and Human Services to help states implement newborn screening for conditions included on the RUSP. Target funding directly to state implementation: allow a state's chief health executive, their designee or a state governmental agency to apply for funding and explain how the grants would be used to implement recommended screenings. Track state-level progress: require annual reports to Congress from FY2027 through FY2031 identifying which recommended conditions each state screens for, which have not yet been implemented, the effectiveness of the grants and recommendations for legislative or administrative action. Invest in newborn screening infrastructure: provide $35 million annually from FY2027 through FY2031, with funds remaining available until expended. The legislation is supported by a broad coalition of rare-disease patient advocacy organizations, family foundations and children’s health organizations including the Children’s Hospital Association, ALD Alliance, ALD Connect, Aicardi-Goutieres Syndrome Advocacy Association, Association for Creatine Deficiencies, Believing for Bryleigh Foundation, Conner's Crusade, CTX Alliance, Cure ALD, HCU Network America, Hunter’s Hope Foundation, Judson's Legacy, Katelynn’s Butterfly Kisses, Krabbe Connect, Little Hercules Foundation, MLD Foundation, Parent Project Muscular Dystrophy, Project Alive, the RARE Foundation, Remember The Girls, The Global Foundation for Peroxisomal Disorders, United Leukodystrophy Foundation, United MSD Foundation for Peroxisomal Disorders and the National Organization for Rare Disorders (NORD). In Congress, Rep. Gillen has been a strong advocate for children’s health. In 2025, she co-led a letter with a bipartisan, bicameral group of colleagues to the Department of Health and Human Services Secretary Robert F. Kennedy and National Cancer Institute Deputy Director Douglas Lowy, urging their agencies to reconsider proposed federal funding cuts to the Pediatric Brain Tumor Consortium. ### Issues : Congress Health