Learn what newborn screenings are, why they are important, how regulations vary by states across the U.S., and how advocacy can make a difference in improving access to and awareness about newborn screenings.
Thanks to the Association of Public Health Laboratories for the creating this helpful video!
Everylife Foundation: Pioneering the New Era of Newborn Screening
EveryLife Foundation for Rare Diseases conducted three roundtables last summer to look at where gaps exist in newborn screening policies and possible solutions. EveryLife shared the outcomes:
THEME 1: Increase federal leadership, accountability, and transparency within federal newborn screening programs
THEME 2: Establish a regional lab network that provides state NBS programs with the opportunity to work together to ensure efficient and faster addition of newborn screening conditions
THEME 3: Increase access to population-level data both before and after newborn screening to facilitate the development and adoption of newborn screening conditions to federal and state panels
THEME 4: Integrate next-generation, evidence-based neonatal sequencing into newborn screening in a manner that can be broadly implemented in all state newborn screening programs
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