It’s official! On February 16th, Sylvia Burwell, Secretary of Health and Human Services, accepted the Advisory Committee of Heritable Disorders in Newborns and Children’s recommendation to expand the Recommended Uniform Screening Panel (RUSP) to include the addition of X-ALD.
This does not require states to test newborns for the disease, as there is no funding accompanying this acceptance; however, many states are poised to move forward with this support.
New York already screens its newborns for X-ALD, and Illinois has passed legislation to do so. Connecticut, New Jersey, and California are close behind.
The ULF thanks all leukodystrophy advocates who participated in the long, hard process that helped to make this happen!