September is Newborn Screening Awareness Month

Rachelen Varghese • September 4, 2026

This September marks the 52nd anniversary of newborn screening. Here at the Testing for Tots program, we believe that early detection, diagnosis and intervention can prevent death or disability and enable children to reach their full potential. Rare, and mostly treatable, conditions are screened for within the first 1-2 days after birth. All it takes is a few drops of blood from a heel stick that is then reviewed in the associated laboratory for serious conditions. (The comprehensive newborn screening panel consists of 3 parts – blood test, hearing and pulse oximetry screens). Although these conditions are rare, about 5,000 babies are diagnosed each year with a rare condition. 


Why Newborn Screening Matters

Newborn screening is a critical tool in the belt of the rare disease community. The number of conditions screened vary from state to state. Our team has been working on adding Fabry Disease in multiple states across the nation (Colorado, Georgia, Massachusetts, Pennsylvania and Wisconsin). If you are interested in supporting our initiatives or partnering with us for your home state, email us at testingfortots@fabry.org.

Did You Know?

A few drops of blood from a heel prick is all it takes to screen for many serious, but treatable conditions - including Fabry disease.

FSIG's Commitment

Through our Testing for Tots program, FSIG advocates for expanded newborn screening and works to ensure families and healthcare providers understand the importance of early detection. Together, we can help every baby get the best possible start in life.

Early Detection, Better Outcomes. Stronger Futures.

Learn more about FSIG's Testing for Tots program and our work to increase newborn screening and  awareness.

Learn more about Testing for Tots

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