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Building a National Framework for Sickle Cell Care

OBJECTIVE

The Hills Tandem’s objective was to provide program leadership, community engagement, and operational support to enhance the SCDAA’s Newborn Screening Program. This included overseeing strategic initiatives across CBOs, driving data-driven improvements, and connecting individuals to essential care resources. Through close coordination with stakeholders, THT strengthened program delivery, improved patient outcomes, and advanced SCDAA’s mission to support vulnerable populations.

Sickle Cell Disease Association of America (SCDAA)

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The Challenge

SCDAA needed to strengthen its $12 million HRSA-funded Newborn Screening (NBS) Program, managing over 26 Community-Based Organizations (CBOs) to deliver consistent, high-quality care for individuals with sickle cell disease (SCD). Ensuring program alignment, reducing care gaps, and improving outcomes required expert guidance.

The Solution

The Hills Tandem (THT) partnered with SCDAA to lead the NBS Program, delivering expert management, data-driven insights, and strategic coordination across CBOs. Through streamlined operations and targeted initiatives, THT ensured that newborns with SCD were connected to vital resources and continuous care.

Program Leadership: Designed and executed a cohesive program structure to meet HRSA goals.

Community Engagement: Tailored programs for 26 CBOs to reduce care gaps and improve resource access.

Data-Driven Insights: Introduced robust tools for monitoring and improving program performance.

Key Results

Enhanced Care Access: Strengthened connections between newborns, families, and essential services, reducing follow-up gaps.

Unified Collaboration: Fostered a coordinated network of CBOs, setting a national standard for excellence.

Operational Model: Delivered a replicable framework for effective newborn screening programs.

The Impact

THT’s leadership enabled SCDAA to elevate its role as a national leader in SCD care. By creating a sustainable framework and improving patient outcomes, the NBS Program continues to set benchmarks for advocacy, care delivery, and community trust.

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