Advocacy Initiatives

In January of 2023, Fabry disease was presented to the Newborn Screening Committee. The decision is in subcommittee awaiting NBSAC members to approve the stakeholder’s survey to collect the data from the healthcare community to present to the DOH in 2024.

In March of 2022, Fabry disease was presented to the GA Newborn Screening Advisory Board. A review board has been formed to discuss the possible implementation of a Fabry NBS pilot.

In April of 2023, a MA legislative initiative introduced Fabry disease via Bill HD 314. It is now awaiting committee approval in the 2024 legislative session.

In June 2023, Fabry disease was presented to the Newborn Screening Committee and now needs a voting physician member to submit the condition for consideration to the NBSAC.

Bill SC S0525 introduced February 9, 2023 by Senator Turner. Next step, work with DHEC to add Fabry to 2024 budget Fall 2023.

In January 2023, Fabry disease was accepted into the subcommittee and is now awaiting further direction.

The presentation is in process and will need a local physician to co-sign the nomination form.