Florida Babies Are at Risk — Newborn Screening for Krabbe Can’t Wait

Florida is falling dangerously behind.

Krabbe disease is a rare but fatal genetic disorder. Without early detection, babies will suffer rapid, irreversible neurological damage and will die young, often before their second birthday. With early detection through newborn screening, treatment can save their lives.

In 2024, Krabbe disease was added to the federal Recommended Uniform Screening Panel (RUSP) after strong scientific evidence demonstrated that early screening dramatically improves outcomes. This reflects clear national expert consensus: newborn screening for Krabbe saves lives.

Yet, nearly two years later, Florida still does not screen for Krabbe disease.

Today, 18 states already screen newborns for Krabbe disease, including New York, Missouri, Ohio, Kentucky, Tennessee, Illinois, New Jersey, Indiana, Pennsylvania, Georgia, South Carolina, Minnesota, Maryland, Texas, Iowa, Oregon, New Mexico, and Kansas. Several more states are moving toward implementation.

Florida has the third-highest birth rate in the nation, meaning more babies are born here than in almost any other state — and every one of them is currently at risk. Each delay means more babies will be missed and will suffer and die.

The Florida Genetics and Newborn Screening Advisory Council is continuing its review of Krabbe screening and is scheduled to revisit the issue at its February 6th meeting. This moment is critical.

We are calling on Florida residents and supporters to contact their state legislators now and urge them to advocate for the immediate addition of Krabbe disease to Florida’s newborn screening panel.

Every baby deserves the same chance at life — regardless of the state they are born in.

Please Take Action Now:

Send a message to your Florida legislators and urge action.

Early screening saves lives. Delay costs them.

Thank you for standing with families and helping protect Florida’s newborns.