Testing for Tots

Pennsylvania

HOW CAN YOU HELP? Write a letter of support for this initiative. The presentation is in process and will need a local physician to co-sign the nomination form.

Georgia

In March of 2022, Fabry disease was presented to the GA Newborn Screening Advisory Board. A review board was formed to discuss the possible implementation of a Fabry NBS pilot and in January 2026, the NSAB approved a 2 year pilot to screen for FD in the state. Efforts are under to legislatively secure funding.

Wisconsin

HOW CAN YOU HELP? Write a letter of support for this initiative. The presentation is in process with a local physician to co-sign the nomination form with focus to present to the NSAC in October 2026.

Minnesota

After completing the nomination form in 2024, presenting to the advisors, gathering patient testimony, and answering questions during the Evidence Review Workgroup's review, the Chairperson informed us of the decision to deny the recommendation of Fabry disease to the MN NBS panel in July 2026.

Utah

 After years of plugging away at several subcommittee meetings, the NBSAC approved moving forward with a recommendation to the Department of Health and Human Services Commissioner, Tracy Gruber, to add Fabry Disease to the newborn screening panel. Once approved, they can begin the implementation process, which includes test development and follow-up workflows. This phase typically takes one to two years, but Fabry is on the way!