It should not be this hard to save a child’s life…

You can help! Take action here.

Hunter & Grammie

Did you know that a simple heel prick through a newborn screening test could have saved my grandson Hunter’s life? Well, it’s true. For diseases like Krabbe, early detection through newborn screening is crucial for affected children to receive potentially lifesaving treatment, which is only effective if administered before a child is symptomatic. Help ensure that the children in your state are screened at birth for Krabbe and similar diseases by Taking Action! Thank you!

A simple heel prick could have saved his life…

With Hope,
Jacque Waggoner
CEO & Hunter’s Grandmother

Krabbe Newborn Screening Family Guide

Krabbe Newborn Screening: A Family Guide provides step by step guidance for families of babies with a positive newborn screen for Krabbe Disease.

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What is Newborn Screening?

Basic facts and information about Newborn Screening.

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Krabbe Newborn Screening

Information for families whose child has received a positive screen for Krabbe Disease and also for medical providers treating a Krabbe NBS positive child.

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Krabbe Newborn Screening Advisory Council

The Krabbe Disease Newborn Screening Council is a cohort of clinicians, state newborn screening staff, and experts focused on providing the best possible outcomes for children who screen positive for Krabbe disease through their state’s newborn screening (NBS) program.

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ALD Newborn Screening

​For ALD, early detection and treatment is essential to preventing irreversible mental or physical disabilities, even death.

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Supplemental Newborn Screening

Learn about Supplemental Newborn Screening.

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Take Action

Advocate for expanded Newborn Screening in your state.

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Thank you to our NBS Partners