Does your state screen every newborn for every condition?
As of January 2026, there are 8 conditions that are Recommended Uniform Screening Panel (RUSP)-approved but not yet screened for in every state. Surge funding would remove the number one obstacle to expediting implementation of RUSP-approved conditions and two additional conditions in the future. Click your state to learn more. Read more about the supporting data and study limitations here.
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As of January 2026, 0 RUSP conditions -- is not screening for
A recent study estimated that $173,387,316 would ensure all -- babies are screened for all recommended conditions and two additional conditions in the future.
Conditions that need expedited implementation
DMD
Duchenne muscular dystrophy
2025
47 states not screening
A lack of the protein dystrophin causes muscle degeneration, most commonly affecting skeletal, heart, and lung muscles. Several core and emerging treatment options are effective as early as infancy and into childhood to manage degeneration.
MLD
Metachromatic leukodystrophy
2025
48 states not screening
An enzyme deficiency that destroys nerve-protecting myelin, leading to neurological, motor, and cognitive damage, and eventually paralysis. Early stem cell transplant and gene therapy can prevent irreversible damage.
IKD
Infantile Krabbe Disease
2024
31 states not screening
A missing enzyme leads to toxic buildup, destroying nerve-protecting myelin. Rapid and progressive damage to the brain and nervous system are often fatal early in life without early intervention. Early intervention with stem cell transplant can slow or alter the course of the disease.
GAMT Deficiency
Guanidinoacetate methyltransferase deficiency
2023
32 states not screening
Impacts creatine creation essential for brain and muscle development. Delayed treatment results in irreversible intellectual disability, but early treatment with creatine supplementation and dietary changes lead to normal or near-normal development.
MPS II
Hunter syndrome
2022
48 states not screening
A lysosomal storage disorder causing progressive damage to the heart, lungs, and brain. Early diagnosis allows enzyme replacement therapy to slow progression.
MPS I
Hurler Syndrome
2016
10 states not screening
Missing enzyme damages the heart, bones, joints, and brain. Disease progression is fatal during childhood without intervention, but early treatment with enzyme replacement therapy can significantly increase lifespan into adulthood.
X-ALD
X-linked Adrenoleukodystrophy
2016
2 states not screening
Damages the nerve-protecting myelin and interferes with hormone production. Timely stem cell transplant can stop or slow brain damage before symptoms appear and support a normal lifespan.
Pompe Disease
2015
1 state not screening
A lysosomal storage disorder where glycogen buildup causes muscle and heart weakness. Usually fatal by age two if left untreated, but early treatment with enzyme replacement therapy dramatically improves outcomes.
Where does the funding go?
States would have access to dedicated funding to expedite implementation of the recommended newborn screenings that have yet to be implemented. Download the map to see the estimated funding needed per state, and read the report for more information on the methodology.