We are on a mission to screen every baby, in every state, for every recommended condition.
A coalition of organizations who see a future with less death and disability
Newborn screening is one of the most impactful public health tools in U.S. history, providing the best possible chance of preventing death, irreversible harm, or disability in babies with serious, rare, but treatable conditions.
The Recommended Uniform Screening Panel (RUSP) is a national list of rare and serious health conditions that experts recommend including in newborn screening programs. The RUSP includes 40 core conditions and 26 secondary conditions, which may be identified by core condition screening or through follow-up testing.
A simple heel prick test performed on newborns identifies those at risk for serious health conditions that benefit from early treatment or intervention.
We are a coalition of rare disease patient advocacy organizations and industry partners on a mission to save as many babies as possible from preventable early death and/or disability through newborn screening.
There is a small and crucial early window where newborn screening is lifesaving. Detecting these conditions at birth is critical, as treatment options are sometimes no longer effective if diagnosis is delayed.¹
Each state has the authority to decide which conditions are screened for and how to run its own NBS program. Dedicated funding to expedite implementation of new conditions would remove the number one obstacle to lifesaving newborn screening.
A one time surge investment of federal funding
Congress must pass a one-time federal funding surge of $173 million to implement expert-recommended newborn screenings because months or even weeks of an undetected condition can mean life or death.
A recent study modeled each state’s funding needs to screen for all RUSP-approved conditions plus two additional, yet-identified conditions. The estimated cost totaled $173 million allocated over the course of five years in all states.
This funding will save lives by ensuring each state program has the resources to screen its newborns for all RUSP-approved conditions and the next two conditions added to the RUSP. This small, but crucial investment could determine whether babies live or die, prevent life-long disability, and spare families and the government millions of dollars in medical costs–all for a tiny fraction of the federal health care budget.
Yes. Congress created the Special Diabetes Program (SDP) in 1998 which established a special statutory funding program to boost diabetes research over five years. The SDP is heralded as catalyzing remarkable progress and fostering unique collaborations that have accelerated the pace in diabetes research. This program can serve as a model to lawmakers for how state RUSP-implementation support may be organized, funded, and distributed.
All research described is based on data available as of January 2026. States may have implemented or are getting ready to implement newborn testing for these conditions since the publication of this research and analysis.
- 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 - KrabbeConnect - Little Hercules Foundation - MLD Foundation - Parent Project Muscular Dystrophy - Project Alive - Remember The Girls - The Global Foundation for Peroxisomal Disorders - United Leukodystrophy Foundation - United MSD Foundation for Peroxisomal Disorders