Sickle Cell Awareness Month
National Sickle Cell Awareness Month
September is National Sickle Cell Awareness Month, and this year’s theme is “Sickle Cell Matters 2025.” Join the National Institute for Children’s Health Quality (NICHQ) in raising awareness about sickle cell trait and the unique challenges faced by people living with Sickle Cell Disease (SCD).
Empowering SCD Warriors
Ensuring Access to Comprehensive Care for ALL
Sickle Cell Disease (SCD), the most commonly inherited red blood cell disorder in the United States, affects approximately 100,000 Americans, and sickle cell trait affects an estimated 2 million individuals. More than 90% of people living with SCD are non-Hispanic Black of African American, and an estimated 3%-9% are Hispanic or Latino. SCD causes acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body, requiring providers who are knowledgeable and understanding.
However, widespread quality care for this population is tempered due to gaps in services. Some gaps originate from an ongoing shortage of trained specialists who are willing to take care of people with SCD, while others are due to lack of provider knowledge about up-to-date guideline-based best practices when treating this population.
Citations
NICHQ INitiatives
Our Sickle Cell Disease Work
NICHQ has been committed to improving care for patients with SCD for more than 15 years. We’re grateful to have insight from a diverse team of experts on these project-related SCD initiatives.
Spread the Word
National Sickle Cell Awareness Month Social Media Toolkit
Help raise awareness about the importance of sickle cell disease and sickle cell trait research and treatment during September. Use the Sickle Cell Disease Association of America’s social media toolkit to show your support for SCD warriors.
Sickle Cell Awareness Month Toolkit
Spread awareness with a collection of campaign materials
Publications
Improving Health Care Transition for Young Patients With Sickle Cell Disease Through Quality Network
JAMA NETWORK OPEN
Transitioning from pediatric to adult health care is crucial for the continuity of care for young adults with sickle cell disease. Among 5 pediatric hematology practices participating in the Florida Pediatric Hematology Learning and Action Network, 3 practices lacked transition programs before this quality improvement project.
Summary
NICHQ’s Florida Children’s Medical Services Learning and Action Network team recently contributed to a study that was published in JAMA. This publication evaluated the implementation of QI programs in five pediatric hematology practices to improve care for youth living with sickle cell disease and aid in the transition from pediatric to adult health care. The study found that collaboration among centers, sharing responsibilities across clinicians, identifying patients in advance using electronic health records and clinic-staff huddles, and having electronic readiness assessments and dot phrases were indicative of successful and sustained outcomes.
NICHQ Insights
Reading List for National Sickle Cell Awareness Month
At NICHQ, we are committed to making access to quality SCD care the norm. Check out our insights to learn how you can support this initiative.
NICHQ News
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Additional Articles & Resources
This aspiring Louisiana pilot can’t fly with sickle cell disease. So he’s editing his genes.
Daniel Cressy will be the first patient in Louisiana to complete the gene therapy treatment for sickle cell disease.
Disparities in Health Care Transition Preparation Among US Youth
This study examined a broad set of individual, family, and health system characteristics to determine which are associated with disparities in receipt of health care transition preparation services among US youth.