Posted August 13, 2026 by NORD
WASHINGTON — In a significant development for public health and the rare disease community, the Health Resources and Services Administration (HRSA) has announced the formation of a National Newborn Screening Workgroup. The initiative, revealed via a public website announcement ahead of its official publication in the Federal Register on August 12, 2026, aims to breathe new life into the nation’s newborn screening infrastructure.
Under this new initiative, the Association for Public Health Laboratories (APHL) has received a prestigious award from HRSA to re-establish a reliable pathway for conditions to be considered and recommended for inclusion on the Recommended Uniform Screening Panel (RUSP). Furthermore, the newly formed workgroup will serve as a collaborative forum to discuss pressing nationwide issues that continuously impact newborn screening programs across the country.
The Recommended Uniform Screening Panel occupies an essential role in the United States newborn screening framework. By providing expert, evidence-based guidance to individual states, the RUSP helps determine which treatable, serious, and rare medical conditions should be included in mandatory state-level newborn screening programs. The implications of this panel extend far beyond administrative policy, serving as a critical mechanism for expanding early detection and timely treatment. For families and healthcare providers, the RUSP helps prevent devastating diagnostic delays, significantly improves overall health outcomes, and ultimately saves children’s lives by catching rare, life-threatening conditions moments after birth before irreversible damage can occur.
The establishment of this workgroup addresses a major policy gap that has caused considerable anxiety among public health advocates, clinicians, and families affected by rare diseases. Following the abrupt dissolution of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) in March 2025, the longstanding federal process for reviewing, evaluating, and recommending new conditions for inclusion on the RUSP came to a sudden halt. This interruption created profound uncertainty regarding the future direction and stability of the national newborn screening system, leaving numerous conditions awaiting evaluation and stalling progress in early intervention.
The newly announced workgroup is intended to function as a direct continuation of the vital functions previously managed by the ACHDNC. By taking over the maintenance of the RUSP and restoring institutional support for the national newborn screening program, the initiative seeks to bridge the gap left behind by the committee’s dissolution and restore momentum to a system that millions of newborns rely on every single year.
Major advocacy organizations, including the National Organization for Rare Disorders (NORD), have responded strongly to the announcement, viewing it as a pivotal milestone for the broader healthcare and rare disease communities. NORD has formally recognized the establishment of the National Newborn Screening Stakeholder Workgroup as an essential and welcome step forward for the national newborn screening program, highlighting that the early detection and treatment of serious, rare disorders are matters of absolute urgency for the populations they represent.
For years, NORD has been working diligently alongside a broad coalition of stakeholders—including patient advocates, medical professionals, laboratory directors, and government agencies—to advance the critical efforts previously championed by the Advisory Committee on Heritable Disorders in Newborns and Children. With the new workgroup now taking shape through the leadership of the Association for Public Health Laboratories and HRSA, stakeholders hope to see a renewed dedication to protecting the nation’s youngest and most vulnerable citizens through comprehensive, timely, and equitable newborn screening practices.
