Programs & Policy
Baby’s First Test
Even though newborn screening has been available for nearly four decades and thousands of children have been identified and treated early, many parents are unaware of the conditions included in screening, that programs vary from state to state, or even if their child was screened.
To address this critical knowledge gap, Genetic Alliance established BabysFirstTest.org, to bring together newborn screening resources and give people an opportunity to share information. In addition to building and maintaining this site, this program also provides the following opportunities:
- Community Challenge Awards
- Consumer Task Force on Newborn Screening
- Social Media/ Networking Initiatives
- Facilitation of Quality Indicator Activities
For more information on these activities please contact Natasha Bonhomme, Project Director, at [email protected]
The Newborn Screening Saves Lives Act
In 2008, the US Congress passed the Newborn Screening Saves Lives Act to address the acute need for both enhanced support for state newborn screening programs as well as expanded research and education opportunities. The legislation called for the establishment of an online clearinghouse of newborn screening information as a central component to achieving these goals. It is this legislation that provided the foundation for BabysFirstTest.org. Read the legislation here.
In September 2009, Genetic Alliance and partners were awarded a cooperative agreement to establish the nation’s first newborn screening educational clearinghouse, connecting millions of parents and health care providers with resources and information relevant to more than four million newborns screened annually. This project is funded by the Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA), grant no. U36MC16509.
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