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Foundation applauds North Carolina lawmakers for newborn screening legislation

November 23, 2021

Ealier this month, North Carolina Governor Roy Cooper signed critical legislation that updates the state’s newborn screening program.

Referred to as “RUSP alignment legislation,” the new state law implements a three-year timeline in which the screening must begin for new conditions added to the federal Recommended Uniform Screening Panel (RUSP). It ensures that the North Carolina Department of Health and Human Services shall provide a report on the status of the addition at 18 months and every six months the addition is delayed past three years.

This new law brings the total number of states that have adopted RUSP alignment legislation in 2021 to four, following similar legislation that was passed in Ohio, Arizona, and Georgia, according to the EveryLife Foundation for Rare Diseases, which helped organize and champion rare disease organizations’ support of the measures. Nationally, the total is six states, including California and Florida, which passed in 2016 and 2017 respectively.

“This life-saving momentum has been the result of a growing effort led by advocates, urging states to keep pace with science,” said Dylan Simon, Newborn Screening and Diagnostics Policy Manager for EveryLife Foundation.

“Cure Sanfilippo Foundation was proud to add our support to the sign-on letter to North Carolina legislators regarding the legislation, organized by EveryLife Foundation,” said Foundation president Glenn O’Neill. “Diagnosing children with life-limiting disorders upon birth provides families with the information needed to immediately seek clinical trial opportunities and therapies, which is quite literally the only lifeline these children have in many cases. The importance of modernized newborn screening cannot be overstated.”

Work continues to advance the federal Newborn Screening Saves Lives Reauthorization Act. The legislation passed the U.S. House of Representatives and is currently awaiting passage in the U.S. Senate. 

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