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This September marks the 50th 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. 

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 (Georgia, Massachusetts, South Carolina, Utah, Colorado, Nebraska, and Wisconsin). If you are interested in supporting our initiatives or partnering with us for your home state, email us at