National Newborn Screening Workgroup

In August 2026, the US Health Resources and Services Administration (HRSA) announced a modernized framework for addressing national newborn screening topics, designed to strengthen the national review process, increase transparency, and better respond to advances in science. As part of this effort, APHL, through the National Center for Newborn Screening Systems Excellence (NBS Excel), convened the National Newborn Screening Workgroup.

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The National Newborn Screening Workgroup serves as a national forum for evaluating candidate conditions for the Recommended Uniform Screening Panel (RUSP), addressing broader issues that impact newborn screening systems across the United States and informing national newborn screening priorities and recommendations.

The workgroup examines a range of topics relevant to the future of newborn screening, including:

• Candidate conditions for newborn screening
• Emerging technologies and genomic applications
• Data, informatics and health information systems
• Follow-up and long-term outcomes
• Public health policy and implementation
• Evidence review and research
• Equity, access and patient engagement
• Education, communication and public awareness
• Newborn screening program operations and administration

The workgroup brings together individuals with a wide range of experiences and perspectives, including people with lived experience, family and advocacy representatives, healthcare providers, public health practitioners, laboratory professionals, researchers and subject matter experts from across the newborn screening system.

APHL convenes and facilitates the workgroup and supports its activities by coordinating meetings, facilitating discussions, and synthesizing findings, reports and recommendations for HRSA's review and consideration.

APHL is accepting expressions of interest from national organizations interested in serving as organizational liaisons to the National Newborn Screening Workgroup.

Organizational liaisons contribute their organization's national perspective to workgroup discussions, share relevant expertise and insights, and help facilitate communication between the workgroup and their organization's members and networks. Organizational liaisons participate in discussions but do not vote on workgroup findings.

This opportunity is intended for organizations whose work reflects a broad, national scope across the newborn screening system. APHL welcomes expressions of interest from public health, laboratory, clinical, genetics, rare disease, family and patient advocacy organizations and other organizations with a cross-cutting role in newborn screening.

APHL anticipates appointing approximately 15 organizational liaisons. Selected organizations will designate an individual to serve as their liaison. Liaisons should be prepared to participate in approximately three in-person meetings per year, each spanning two days. Additional virtual meetings may be convened as needed.

Please note that travel and lodging expenses are the responsibility of the individual or represented organization.

Organizations interested in serving as an organizational liaison should submit a letter of interest (maximum two pages) that includes:

• Organization name and a brief description of its mission or primary focus
• Name, title and contact information for the proposed liaison
• Description of how the organization's work reflects a national, cross-cutting scope within the newborn screening system
• Explanation of the organization's interest in serving as a liaison and the perspective or expertise it would bring to the workgroup

Submit letters of interest to [email protected] by October 9, 2026.

Expressions of interest will be reviewed based on the overall composition of the workgroup and the perspectives needed to support its work. Submission of an expression of interest does not guarantee selection.