Sickle cell disease (SCD) is an inherited red blood cell condition affecting more than 100,000 people in the United States. People living with SCD are born with the condition because the sickle cell gene is passed on from both parents. About two million people in the United States carry the sickle cell trait. Each year, newborn screening programs identify about 1,800 babies who have SCD.
SCD occurs most often among people of African ancestry. One in 365 African American babies are born with SCD. The disease also affects people of Hispanic, Mediterranean, Middle Eastern, and Indian heritage.
People living with SCD have red blood cells that break easily and clog blood vessels, blocking blood flow to organs and tissues. This results in anemia, acute pain episodes, organ damage, and increased infections and can lead to premature death.
Unfortunately, fewer than half of children living with SCD in the US receive disease-modifying treatment.
If children and adults living with SCD and their families cannot access specialty, high-quality comprehensive care, they can experience:
- Lower quality of life and difficulties with daily activities
- Missed time at school or work and lost income
- Expensive bills from hospitalizations, doctor visits, and treatments
Our work in this area
Since the 1960s, we have worked to equip our health care systems so that they identify and treat people with SCD as soon as possible. We support clinics and community organizations that provide testing, counseling, treatment, and education. We want to make sure all children living with SCD play, go to school, and thrive as they become young adults. We imagine a world that supports their social, health, and emotional needs.
We provide grants1 that create regional networks of care, education, and social services across the United States.
From 2021–2026, HRSA-funded investments have:
- Reached more than 25% of all people with SCD through approximately five comprehensive centers, more than 50 clinical sites, and 25 community-based organizations—about 25,000 people.
- Placed 77% of people with SCD served on disease-modifying therapy.
- Educated and trained 500 providers per year on the management of SCD through telemonitoring.
- Implemented SCD-focused community health worker training to support the workforce and build capacity.
Program structure
The Sickle Cell Disease Regional Care Excellence (SoRCE) Program aims to improve the health of people with SCD. It does this by:
- Expanding access to care.
- Improving the quality of care.
- Tracking quality of life indicators.
The program:
- Works with clinicians to improve SCD care.
- Connects people and families to high-quality clinical care and community services.
The SoRCE Program expands the national network of SCD care by funding seven Regional Coordinating Hubs (RCHs)1 . These hubs partner with Clinical Community Spokes (CCSs) to strengthen access to care, build local partnerships, and improve outcomes for individuals living with SCD.
FY 2026 SoRCE Award Recipients
Northeast Region
Rhode Island Hospital, Rhode Island
Mid Atlantic Region
Thomas Jefferson University, Pennsylvania
Southeast Region
Duke University, North Carolina
South Region
University of Alabama at Birmingham, Alabama
Midwest Region
Children’s Hospital Medical Center, Ohio
Heartland Region
Washington University – St. Louis, Missouri
West Region
The Center for Comprehensive Care & Diagnosis of Inherited Blood Disorders, California
HRSA intends to fund the Sickle Cell Disease National Coordinating Center (SCDNCC)2 to provide national guidance, training, and coordination for the awardees of the SoRCE Program to ensure that seven Regional Coordinating Hubs (RCHs) deliver comprehensive, high-quality care.
The SCDNCC will support RCHs by providing:
- Training and technical assistance
- Data infrastructure and reporting support
- Continuous quality improvement coaching
- National workgroups and collaboration forums
- Educational resources for clinicians, families, and community-based organizations
- Rapid guidance and support for emerging issues affecting people with SCD
The SCDNCC will support consistent, high-quality care across all regions and strengthens connections between clinical providers and community organizations.
1Authorized under the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention and Treatment Act of 2018, 42 USC § 300b 5.
2The legislative authority supporting this work is the Special Projects of Regional and National Significance (SPRANS).