Leukodystrophy Resource and Research Organisation Inc. | Incorporated No. IA41033

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Adrenoleukodystrophy added to the Recommended Uniform Screening Panel

 

We are very happy to announce that on February 17th, 2016, the US 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 in the US that need to begin ALD newborn screening as soon as possible. In Australia we are undertaking a lot of work to achieve the same result here, hopefully later this year.

We would like to thank Secretary Burwell, the incredible team of ALD advocates across the world, and to all of you for your support to help make this vision a reality.

Kind regards

Bob