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Fact Sheets

Living Well with Sickle Cell Disease

Toolkit for Living Well with Sickle Cell Disease [PDF – 4 MB]
The toolkit is a collection of materials that can be used to help people living with sickle cell disease (SCD) to manage their health and keep track of important information regarding medical care and treatment.

Living Well With Sickle Cell Disease [PDF – 2 MB] | French [PDF – 2 MB] | Spanish [PDF – 290 KB]
People with sickle cell disease can live full lives and enjoy most of the activities that other people do. The following tips will help you, or someone you know with sickle cell disease, stay as healthy as possible.

Five Tips to Help Prevent Infection [PDF – 2 MB] | French [PDF – 2 MB]Spanish [PDF – 324 KB]
Common illnesses, like the flu, can quickly become dangerous for a person with sickle cell disease. The best defense is to take simple steps to help prevent infections.

Emergency Guide: When to See the Doctor [PDF – 2 MB] | French [PDF – 2 MB]Spanish [PDF – 275 KB]
It is very important that every person or family with a child with sickle cell disease has a plan for how to get help immediately, at any hour, if there’s a problem.

Fact Sheet: Sickle Cell Disease and College [PDF – 637 KB]
Nine steps to living well with sickle cell disease in college.

Sickle Cell Trait

Sickle Cell Trait Toolkit
CDC, together with the American Society of Hematology (ASH) ( and the Sickle Cell Disease Association of America (SCDAA) (, created the Sickle Cell Trait Toolkit. The toolkit is a collection of resources to increase understanding of sickle cell trait.


Fact Sheet: Sickle Cell and Pregnancy [PDF – 1 MB] | French [PDF – 243 KB]Spanish [PDF – 974 KB]
What you should know about sickle cell disease and pregnancy.

Supporting Students

Supporting Students with Sickle Cell Disease [PDF – 969 KB]
The purpose of this booklet is to inform people about sickle cell disease and describe the roles that teachers, school staff and parents/caregivers play in supporting students living with this condition.

 State Data

Best Practices

Hemoglobinopathies: Current Practices for Screening, Confirmation and Follow-up [PDF – 4 MB]
Best practices for hemoglobinopathy newborn screening and diagnostic testing.


Sickle Cell Disease National Resource Directory
A compilation of national agencies, state-based health providers, and community-based organizations that provide services and resources for individuals and families affected by sickle cell disease.