Home - Surge to Save Newborns

Support the Surge to Save Newborns

Screen every baby, in every state, for every recommended condition–because too many are falling through cracks in the system

It takes up to a decade or more for babies in all 50 states to receive the recommended screening for rare, serious and treatable conditions. Surge funding is urgently needed.

Surge to overcome and prevent newborn screening delays

We strongly support a one-time federal funding surge to implement expert-approved newborn screenings, because months or even weeks of an undetected condition can mean life or death.

Conner’s story:

Screening for ALD not only saved Conner’s life but informed other family members impacted by the condition.

Aidan’s story:

Aidan lost his life to unscreened ALD, but his legacy is diagnosing and providing other boys with screening, early diagnosis and survival.

Anna’s perspective:

States often do not have the resources to screen for newly recommended conditions, and funding is the only way to overcome this issue.

Bryleigh’s story:

Bryleigh lost her life to unscreened MLD—in 2025 it became one of the latest conditions recommended for universal newborn screening.

Screening by the numbers

14,000

Babies identified each year with serious but treatable conditions through newborn screening

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Up to 10 years or more for all 50 states and U.S. territories to implement and begin screening for a Recommended Uniform Screening Panel (RUSP)-approved condition.

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Conditions that are expert-approved but not yet screened for in every state, some of which were recommended over 10 years ago.

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>$1M

Costs to families associated with undetected rare disease, which in many cases can be averted through NBS.

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$173M

Estimated total for a one-time funding surge allocated over five years for all states to screen for all RUSP-approved conditions.

98%

States not yet screening for all 40 of expert-recommended conditions.

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