Pages in Programs & Policy

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, 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 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.

Looking for more specific information?

Find more information about a specific condition or state

Find a condition What your state offers

Was this Helpful?

Your input helps us improve the site for parents and practitioners. Leave us feedback about this page.

Was this page helpful?

Was this Helpful? - Feedback

Your input helps us improve the site for parents and practitioners. Leave us feedback about this page.

We're sorry to hear that. How can we do to improve it?

This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.

Last Reviewed - 10/12/2018

Ask an Expert

Have a question that’s not answered on Baby’s First Test? Send it to our experts.