August 13, 2026 — A National Newborn Screening Workgroup was announced by the Health Resources and Services Administration (HRSA) via public website (pending Federal Register publication on August 12, 2026). The Association for Public Health Laboratories (APHL) received an award from HRSA to re-establish a pathway for conditions to be considered and recommended for inclusion on the Recommended Uniform Screening Panel (RUSP), and to discuss nationwide issues impacting newborn screening.
The RUSP is essential to the nation’s newborn screening by providing expert guidance to states on which treatable serious and rare diseases to include in state newborn screening programs. It is critical to expanding early detection and treatment, helping prevent diagnostic delays, improving health outcomes and saving children’s lives.
Following the dissolution of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) in March 2025, the longstanding federal process for reviewing and recommending conditions for the RUSP was halted, creating significant uncertainty for the future of the national newborn screening system. This workgroup would be a continuation of the ACHDNC’s maintenance of the RUSP and re-establish support for the national newborn screening program.
NORD recognizes the establishment of a National Newborn Screening Stakeholder Workgroup as an important step forward for the national newborn screening program. Early detection and treatment of serious, rare disorders are critically important for the rare disease community. NORD has been working diligently with all stakeholders to advance the efforts of the Advisory Committee on Heritable Disorders in Newborns and Children.
