Julia Jenkins, Executive Director at Everylife Foundation, describes three of the organization’s goals for newborn screening.
As Ms. Jenkins explains, the primary goal is to pass legislation in each state that requires newborn screening for all diseases on the Recommended Uniform Screening Panel (RUSP). This is to ensure that, moving forward, when new diseases are added, every state is automatically required to begin the process of screening for them.
The second goal is to add more diseases to the RUSP. As Ms. Jenkins mentions this is secondary because without state alignment (the first goal), this goal becomes more complicated to achieve.
The third goal is to reauthorize the Newborn Screening Saves Lives Act which expired in 2019.
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