February 17, 2016,
Adrenoleukodystrophy added to the Recommended Uniform Screening Panel!
On February 17th, 2016, the Secretary of the Department of Health & Human Services, Sylvia Burwell,approved the addition of adrenoleukodystrophy (ALD) to the Recommended Uniform Screening Panel (RUSP), the federal list of genetic diseases recommended for state newborn screening programs.Read her letter here.
The addition of ALD to the RUSP will expedite the process of adding ALD to state newborn screening programs. California and New Jersey can now join New York and Connecticut in screening newborns for ALD allowing for timely diagnosis and treatment. Our work has only begun, however: there are still 46 states that need to begin ALD newborn screening as soon as possible. The ALD community would like to thank Secretary Burwell and the incredible team of ALD advocates across the country for their support to help make this vision a reality.