Resources
Build understanding you can use across school, care, movement, culture, and community.
Sickle cell, briefly
Sickle cell disease and sickle cell trait are related, but they are not the same. Understanding the difference is an important first step.
People with sickle cell disease inherit two genes—one from each biological parent—that code for abnormal hemoglobin. At least one is a sickle cell gene. The abnormal hemoglobin can make red blood cells hard, sticky, and less able to move through small blood vessels, leading to anemia, severe pain, and other serious complications.
Learn from the CDC ↗People with sickle cell trait inherit one sickle cell gene and one gene that codes for typical hemoglobin. Trait is not a mild form of sickle cell disease, but it can have real health implications. Some people experience complications involving the kidneys, spleen, eyes, or the body’s response to intense physical activity, heat, dehydration, altitude, or low-oxygen conditions. Their concerns deserve attentive care and clear information for safe participation in sports and everyday life.
Learn from the CDC ↗
From information to action
The strongest resources do more than explain sickle cell. They help people recognize what matters, ask better questions, and make more informed decisions.
Resource collections
Choose a collection to find practical tools, trusted information, stories, health updates, and opportunities to connect.
School & education
Start with SickleWell’s practical school-year guide, then go deeper with federal guidance for families and educators.
Planning steps, adaptable email templates, 504 and IEP guidance, possible supports, California rights, and direct help.
Open the guide →U.S. Department of EducationA concise explanation of federal disability protections for students with sickle cell disease.
Visit resource ↗Centers for Disease Control and PreventionPractical information about school participation, health needs, physical activity, and learning support.
Visit resource ↗Sports, movement & recreation
Sickle cell disease and sickle cell trait are different. These resources help families, athletes, coaches, and programs understand each one in the context of movement.
Health guidance for daily life, including physical activity, hydration, temperature, and conversations with a care team.
Visit resource ↗Centers for Disease Control and PreventionA focused guide to participation, warning signs, hydration, rest, and reducing exercise-related risk.
Visit resource ↗NCAA Sport Science InstituteInformation for athletes and staff about testing, safe participation, conditioning, and emergency planning.
Visit resource ↗Arts, stories & media
Explore books, films, and shows that place sickle cell within childhood, friendship, family, humor, imagination, and everyday life.
Comedian and filmmaker J. Snow documents life with sickle cell through hospital stays, humor, vulnerability, and survival.
Visit resource ↗TelevisionCreator Rapman uses a superhero story rooted in sickle cell to center Black lives, voice, and possibility.
Visit resource ↗BookTen connected stories follow middle schoolers walking home. In “Water Booger Bears,” Jasmine returns to school after an extended absence related to sickle cell disease.
Visit resource ↗BookA novel in verse about grief, family, and finding a voice through poetry. The story includes Lonnie’s classmate Eric, who lives with sickle cell disease.
Visit resource ↗Reading listExplore children’s, young adult, and adult books—including graphic novels, memoirs, mysteries, romance, contemporary fiction, and nonfiction.
Visit resource ↗DocumentaryPatient stories and healthcare perspectives come together in a short film about sickle cell’s history, lived impact, care gaps, and the need for greater understanding.
Visit resource ↗Care, research & updates
These sources provide evidence-based clinical guidance and timely updates from organizations with deep sickle cell expertise.
Expert statements on therapies, approvals, vaccines, safety concerns, and other developments affecting the community.
Visit resource ↗American Society of HematologyEvidence-based guidance on pain, cerebrovascular disease, cardiopulmonary and kidney health, transfusion, and transplantation.
Visit resource ↗American College of Emergency PhysiciansClinical tools developed to support evidence-based evaluation and management in emergency departments.
Visit resource ↗Events & community
These national event hubs bring together people living with sickle cell, families, advocates, clinicians, researchers, and community organizations.
Find World Sickle Cell Day, Awareness Month, advocacy, community learning, and other national opportunities.
Visit resource ↗Sickle Cell Disease Association of AmericaA major multidisciplinary gathering for community, clinical, research, education, and advocacy exchange.
Visit resource ↗Foundation for Sickle Cell Disease ResearchScientific exchange, patient and caregiver learning, workforce education, and community connection in a hybrid format.
Visit resource ↗Looking for support?
If you need help with a school concern, a transition after care, or participation in sports and recreation, tell us what’s happening.
Request support