National Sickle Cell Awareness Month

September is National Sickle Cell Awareness Month!

This annual observance began in 1975 and gained official recognition from the federal government in 1983, as a way of “reaffirming our commitment to reduce the burden of illness, disability, and premature death imposed by this disease.” National Sickle Cell Awareness Month provides an opportunity to:

• Increase public knowledge and understanding of sickle cell disease (SCD)
• Promote advancements in treatment and care
• Support expanded research into SCD and its related complications

SCD is a complex group of inherited blood disorders that affects about 100,000 people in the United States; more than 90% are non-Hispanic Black/African American, and an estimated 3%–9% are Hispanic/Latino. In addition, about 40% of individuals with SCD in the United States are children and adolescents.

Improving Health Outcomes Through Communities and Connections

This year, the HHS Office of Minority Health is commemorating National Sickle Cell Awareness Month with its theme, Improving Health Outcomes Through Communities and Connections. This theme focuses on improving health outcomes for people with SCD through community-level support and healthy lifestyle choices.

Resources and Events

National Sickle Cell Awareness Month Toolkit

The National Sickle Cell Awareness Month Toolkit is designed to help individuals and organizations raise awareness about SCD. Download, share, and customize the content in this toolkit to meet the unique needs of your audiences.

Register for “Trust, Clinical Trials, and Transformative Therapies: Ethical Pathways in Gene Therapy and Sickle Cell Disease”

Thursday, September 18, 2025, 1-2:30 p.m. ET

Part one of “Sickle Cell Disease and Gene Therapies: A Two-Part Webinar Series.” Hosted by the HHS Office for Human Research Protections, this 90-minute webinar will bring together individuals with SCD, clinical researchers, bioethics experts, and a community-based organization to explore how partners can collectively build confidence and trust around life-changing, novel SCD therapies.

Register for Innovations and Advances in Sickle Cell Disease Gene Therapies

Thursday, September 25, 2025, 2-3:30 p.m. ET

Part two of “Sickle Cell Disease and Gene Therapies: A Two-Part Webinar Series.” Hosted by HHS OMH, this 90-minute webinar will focus on the Centers for Medicare & Medicaid Services (CMS) Cell and Gene Therapy Access Model, which leverages outcomes-based agreements to reduce costs and increase access for eligible individuals enrolled in participating state Medicaid programs. This webinar will also include presentations from a state Medicaid director and a SCD Warrior who will share about their journey through gene therapy clinical trials.

SCD Basics, News, Treatments and Therapies

About Sickle Cell Disease | Centers for Disease Control and Prevention

Sickle Cell Disease | Medline Plus

Sickle Cell Disease Gene Therapy Education Project | National Institutes of Health’s National Human Genome Research Institute

Cell and Gene Therapy (CGT) Access Model | Centers for Medicare and Medicaid Services

FDA Approves First Gene Therapies to Treat Patients with Sickle Cell Disease (press release) | U.S. Food and Drug Administration

Sickle Cell Disease (YouTube playlist) | U.S. Department of Health and Human Services

Managing SCD Complications

In people with SCD, red blood cells can become rigid and deform into a crescent or sickle shape. Sickled cells die early and often become lodged in small blood vessels, restricting blood flow, which can lead to serious health problems throughout the body. SCD-associated complications include anemia, acute and chronic pain, infections, pneumonia and acute chest syndrome, stroke, and kidney, liver, and heart disease.

Managing Risk Through a Healthy Lifestyle

Improving Outcomes Through Supportive Communities