/C O R R E C T I O N -- Surge to Save Newborns Coalition/

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Mar 05, 2026, 12:12 ET

In the news release, Surge to Save Newborns Coalition Launches with New Study Showing Cost to End State-by-State Newborn Screening Variability, issued 05-Mar-2026 by Surge to Save Newborns Coalition over PR Newswire, we are advised by the company that the reference for "Expanded newborn screening: trends and considerations." should be removed. The only reference should be "Genetic insights and newborn screening advances." and the associated footnote number should be 1 instead of 2. The complete, corrected release follows:

Surge to Save Newborns Coalition Launches with New Study Showing Cost to End State-by-State Newborn Screening Variability

Study signals one-time funding solution to save more babies

WASHINGTON, March 5, 2026 /PRNewswire/ -- The Surge to Save Newborns coalition launched today alongside a new study from Manatt Health that estimated the cost to eliminate the little-known significant variability in how states screen newborns for treatable yet potentially deadly rare diseases. While newborn screening (NBS) identifies these conditions in approximately 14,000 babies annually, the report helps to highlight how differences in state screening panels mean that not all babies have the same opportunity for early detection, which can determine whether they live or die.

The Department of Health and Human Services (HHS) maintains the Recommended Uniform Screening Panel (RUSP), a list of 40 core and 26 secondary conditions that experts agree should be included in state programs because they are treatable if detected early. However, many states lack the funding and infrastructure to implement these screenings in a timely manner.

Delays like these can be the difference between life and death for babies born with these conditions because many treatments are only effective if started early, before symptoms are present. However, screening implementation for a single new condition can ultimately take up to 10 years or more for all 50 states to achieve universal implementation of recommended screenings.¹

The new study estimated it would cost $173 million to implement all RUSP-approved conditions across all 50 states, including those added in late 2025 and two anticipated future conditions.

The Surge to Save Newborns Coalition is using this estimated figure as the basis for a one-time surge funding request to Congress and the Administration to overcome screening delays and help prevent them in the future. A $173 million investment is a small fraction of the HHS budget and would not only save lives but also spare families and the government from crushing but avoidable medical costs.

"Newborn screening is one of the most important public health programs of our lifetime, yet too many babies miss the critical window for early diagnosis if the state in which they are born does not screen for a recommended condition," shared Elisa Seeger, Founding Partner of the Surge to Save Newborns and Founder of the ALD Alliance. "Funding is the number one barrier to screening implementation across the states, and we now have the roadmap in hand to change that."

A zip code should not dictate whether or not a baby is screened for treatable conditions. The Surge to Save Newborns aims to bring attention to this problem and hopefully shorten the time to universal implementation, therefore saving lives.

"For some conditions, even a short delay in diagnosis can mean the difference between life and death. This funding request is not simply sound policy — it supports the timely, lifesaving care U.S. children and their families deserve," added Anna Grantham, Founding Partner of the Surge to Save Newborns and Director of Newborn Screening and the Leukodystrophy Care Network at the Hunter's Hope Foundation.

About the Surge to Save Newborns Coalition
Founded by more than 15 rare disease advocacy organizations, like the ALD Alliance and Hunter's Hope Foundation, along with support from Travere Therapeutics, the Surge to Save Newborns coalition is dedicated to saving babies from preventable early death and disability. The coalition comprises rare disease patient advocacy organizations and industry partners that strongly support the implementation of all current RUSP conditions and the next two conditions to be added to the newborn screening panel.

To view the interactive state map, read the full report, and learn how to take action, visit surgetosave.org.

Media Contact:
Stephanie Wright
CURA Strategies
[email protected]

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