Advancing Rare Disease Detection and Treatment

Department of Health and Human Services (HHS) · December 17, 2025

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Opening and introductions

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Dr. Stephanie Herodopoulos, chief of staff to the office of the surgeon general, opened the event at HHS, welcomed Secretary Robert Kennedy and other officials, and framed the day as an announcement on rare diseases and newborn screening.

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HHS announced that Secretary Robert Kennedy approved adding Duchenne muscular dystrophy (DMD) and metachromatic leukodystrophy (MLD) to the Recommended Uniform Screening Panel (RUSP), a federal recommendation that states must adopt into their newborn screening programs; families and lawmakers attended the signing.

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Transcript

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