NORD supports robust, well-funded newborn screening programs in every state.
Today, nearly 4 million newborns are screened annually in the United States for certain rare conditions that can cause permanent disability or death without early detection and treatment.1 All 50 states currently mandate screening for at least 32 serious rare conditions.
A simple blood test performed shortly after birth can detect these conditions before symptoms appear. Early identification allows health care providers to begin treatment immediately, preventing irreversible health complications. The specific conditions screened are determined by each state, with most programs currently screening for a majority of the 40 conditions included on the federal Recommended Uniform Screening Panel (RUSP). If a screen comes back positive, the health department notifies the newborn’s health care provider, and appropriate follow-up measures are set into motion.
Critical update: why 2025 data matters
In April 2025, the sudden termination of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) disrupted the federal newborn screening system. This committee was responsible for reviewing evidence and recommending which conditions should be added to the RUSP. In the absence of the ACHDNC, there is no comparable federal body currently performing this function.
As a result, this Report Card now serves as a critical indicator. As the newborn screening system responds to this disruption, the data will help measure whether disparities between states widen in the absence of federal guidance.
NORD’s response
NORD is actively monitoring developments at the U.S. Department of Health and Human Services (HHS) and working with policymakers on both sides of the aisle to pursue a solution. Without expert federal oversight, delays in diagnosis and treatment may occur—putting children’s lives at risk. Read NORD’s full statement on the ACHDNC termination →
Important note
The two most recent conditions were added to the Recommended Uniform Screening Panel (RUSP) after the close of the December 2025 data collection period. As a result, grades in this edition of the Report Card are based on a core RUSP count of 38 conditions.
The history of newborn screening
Newborn screening originated in the 1960s when Dr. Robert Guthrie developed a blood test for phenylketonuria (PKU), a serious and rare metabolic disorder that can cause irreversible brain damage if not detected and treated early in life. Infants with PKU appear healthy at birth but lack an enzyme necessary to break down certain proteins. As a result, an amino acid called phenylalanine accumulates in the body and causes permanent damage.
Before the development of Dr. Guthrie’s blood test, children with PKU were often not diagnosed until irreversible brain damage had already occurred. The introduction of newborn blood screening allowed health care providers to identify PKU shortly after birth, initiate early treatment, and prevent severe health complications associated with the condition.1
What we evaluate
Screening for RUSP conditions
Newborn screening programs are regulated and administered at the state and territorial level, allowing each program to be tailored to local needs. The U.S. Department of Health and Human Services (HHS) administers the Recommended Uniform Screening Panel (RUSP), which identifies conditions determined to be appropriate for universal newborn screening.
To date, the RUSP includes 40 rare conditions, in addition to screening for congenital heart disease and hearing loss.2 Many states also screen for additional serious conditions detectable at birth, known as “secondary conditions.” Each state determines which RUSP and secondary conditions are included on its newborn screening panel.
NORD believes that states should screen for all RUSP conditions and evaluates states based on the number of RUSP conditions included on their newborn screening panel. States that screen for a greater number of RUSP conditions receive higher grades.
Adding RUSP core conditions
As new screening technologies and treatments become available for serious rare disorders, additional conditions become appropriate candidates for newborn screening. The number of conditions included on the RUSP has grown over time as new conditions are added through a rigorous nomination and review process. The most recent conditions added to the RUSP were Duchenne muscular dystrophy (DMD) and metachromatic leukodystrophy (MLD) in 2025.3
NORD believes it is critical for states to have efficient processes in place to add new conditions to their newborn screening panels once they are included on the RUSP. For many states, the ability to add conditions depends on factors such as available funding and the readiness of the public health system to implement new screening protocols. In addition, the process of adding conditions can be time-intensive.
In many states, new conditions are introduced through pilot programs to ensure appropriate processes, staffing, and tools are in place to manage increased screening volume. These pilot studies can take months or even years to complete. States with timely and effective processes for adding RUSP conditions to their screening panels receive higher grades.
Data sources & acknowledgements
This analysis relies on state newborn screening laws and regulations, state public health department websites, and data compiled and made publicly available by NewSTEPs (Newborn Screening Technical Assistance & Evaluation Program). NewSTEPs is a national resource center that collects and disseminates newborn screening program data from all 50 states and U.S. territories. NORD gratefully acknowledges NewSTEPs’ critical work in making state newborn screening data accessible to researchers, advocates, and policymakers.
1.Gaviglio A, McKasson S, Singh S, Ojodu J. Infants with Congenital Diseases Identified through Newborn Screening—United States, 2018–2020. International Journal of Neonatal Screening. 2023;9(2):23. Published April 13, 2023. doi:10.3390/ijns9020023
2.Federal Advisory Committee on Heritable Disorders in Newborns and Children. Recommended Uniform Screening Panel.
Health Resources & Services Administration. November 2024.https://www.hrsa.gov/advisory-committees/heritable-disorders/rusp
3. U.S. Department of Health & Human Services. Secretary Kennedy Adds Duchenne Muscular Dystrophy, Metachromatic Leukodystrophy to Newborn Screenings. December 2025. https://www.hhs.gov/press-room/secretary-kennedy-adds-duchenne-muscular-dystrophy-metachromatic-leu…
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