Resources You Can Use: Sickle Cell Disease

Posted by Sarah Levin-Lederer on June 15th, 2026 Posted in: Blog
Tags: genetics, Health Literacy, resources, sickle cell disease

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This Friday, June 19 is World Sickle Cell Disease Day—an opportunity to promote education and advocacy for sickle cell disease.

Learn more about sickle cell disease, genetics, and resources for sharing information with your community.

What is Sickle Cell Disease?

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. If you have SCD, there is a problem with your hemoglobin that changes the shape of the red blood cells. The cells are supposed to be disc-shaped, but for people with SCD, instead they are crescent, or sickle, shaped.

Learn more about sickle cell disease with these resources:

• Sickle Cell Disease (MedlinePlus Encyclopedia)
• Sickle Cell Disease (MedlinePlus)
• What is Sickle Cell Disease? (National Heart, Lung, and Blood Institute)
• Sickle Cell Disease (CDC)
• Real Stories from People Living with Sickle Cell Disease (CDC)

Learn about Genetics

Sickle cell disease is a genetic disorder, which means it’s caused by changes in your genes. Genes are parts of DNA found in your cells that carry instructions for how your body grows, develops, and functions.

Start with the consumer-friendly genetics section of MedlinePlus including a list of MedlinePlus Health Topics pages on genetic disorders.

Learn more about how genetics affect our health with these resources:

• Genetic Disorders (MedlinePlus)
• Genetics (MedlinePlus Encyclopedia)
• Genes and Gene Therapy (MedlinePlus)
• Genetic Basics (CDC)
• Genetic Counseling (CDC)
• Sickle cell disease gene therapy education project (National Human Genome Research Institute)

Get Involved

Share information with your community in a variety of ways with resources including books, FAQ sheets and infographics, and more.

Resources from the NNLM Reading club include books, discussion guides, and additional resources:

• The Inherited Diseases selections included A Sick Life by Tionne “T-Boz” Watkins on her personal experience living with SCD and being an advocate.
• Learn more about Human Genetics with books and resources.

Share information with FAQ sheets and infographics:

• Sickle cell disease resources (CDC)
• Sickle cell disease communication resources (National Heart, Lung, and Blood Institute)
• Videos and podcasts on sickle cell disease (CDC)

Find information on joining a sickle cell disease study and learn more about ClinicalTrails.gov and finding open medical studies with An Introduction to ClinicalTrails.gov (on-demand).