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.

Sickle cell disease affects mostly Black patients. How the system treats it shows the deep roots of systemic racism.

Sickle cell disease is a serious genetic condition that can cause severe pain, strokes and organ failure, affecting mainly people of African descent. Many adults don't know if they are carrying the sickle cell trait, which can be passed on to children, so medical providers want to raise awareness about the importance of genetic testing.

A facility that treats people affected by the blood-based disorder, sickle cell anemia -- also called sickle cell disease -- received a $50,000 grant from biotech company Global Blood Therapeutics (GBT). The Indiana Hemophilia and Thrombosis Center seeks to learn more about treatments for the disease.

The Indiana Hemophilia and Thrombosis Center in Indianapolis has received a 3-year grant to collect data aimed at helping Hoosiers living with sickle cell anemia.

For years, Tamitria Jernigan took Tashea to Illinois for sickle cell treatment. A lot of families in Lake County do this because the care is better.

Doctor Emily Meier usually practices hematology at the Indiana Hemophilia and Thrombosis Center in Indianapolis. But four times a year Meier and her team drive two hours north to Lake County and host a clinic for children diagnosed with sickle cell disease.