Sickle cell experts say the future of a critical data collection program is in flux after staff at the CDC's Division of Blood Disorders were placed on administrative leave without a clear future plan.

A new statewide dashboard aims to streamline data collection on people with the sickle cell disease to better serve them and provide specialized care where they need it.

Sickle cell disease is a debilitating genetic blood disorder. Many kids with the disease find themselves missing out on fun, immersive experiences like overnight summer camp. But one Indiana camp is looking to change that.

Together, they’ve faced chronic pain and medical racism — and found their voices.

The FDA just approved new gene therapies for sickle cell disease. Now, ensuring access to the treatment is top of mind for patients and doctors.

Children with sickle cell disease rely on daily doses of penicillin to prevent life-threatening infections. But lately, some are finding it hard to fill their prescriptions.

A lack of data regarding sickle cell disease in the U.S. stunts efforts to improve outcomes for patients. The federally funded Sickle Cell Data Collection Program aims to chip away at these data gaps.

Sickle cell disease was long considered a pediatric illness because it took so many children's lives. Health interventions have made it possible for people with sickle cell in the U.S. to live well into adulthood. But the transition out of pediatric care comes with many challenges.

Sickle cell disease can damage patients bodies in ways that affect their ability to have children, and some treatments may also affect fertility. But many in the resource-strapped sickle cell community cannot access fertility treatments.

Health officials say there is an urgent need for blood donors to help those living with sickle cell disease.