Did you know sickle cell disease affects people from around the world?
Learn why and how to get screened for sickle cell trait.
Did you know there’s more than one way to inherit sickle cell trait? Learn how it is inherited.
The purpose of this booklet is to inform people about sickle cell disease (SCD) and describe the roles that teachers, school staff and parents/caregivers play in supporting students living with SCD. The booklet highlights ways SCD may impact a student’s daily life and describes how school staff can make accommodations (i.e., adjustments to the classroom setting or instruction) to meet the needs of children who may experience health problems associated with SCD during the school day. The content covers information on ways SCD might impact education outcomes and information about pain, stroke, and symptoms associated with SCD that school personnel should know. Each student’s experience with SCD is different and the tips discussed should not replace any medical advice a person with SCD receives from their doctor.
The Registry and Surveillance System for Hemoglobinopathies (RuSH) pilot project funded seven states to participate in data collection on sickle cell disease and thalassemia. State-specific fact sheets feature data on sickle cell disease provided by the pilot project.
Toolkit for Living Well with Sickle Cell Disease
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. The toolkit has multiple uses it is designed to help: (1) patients and their caregivers with the daily management of the disease, (2) organize important information regarding medical services, and (3) assist with maintaining communication between the many health and service providers that are involved with patient care.
Fact Sheet: Sickle Cell Disease and College
Living Well With Sickle Cell Disease [ French | Spanish ]
Emergency Guide: When to See the Doctor [ French | Spanish ]
It is very important that every person or family with a young child with sickle cell disease have a plan for how to get help immediately, at any hour, if there’s a problem. Be sure to find a place that will have access to your medical records or bring a copy.
Sickle Cell Disease National Resource Directory
The Sickle Cell Disease National Resource Directory
is a compilation of national agencies, state-based
health providers, and community-based organizations
that provide services and resources for individuals
and families affected by SCD.
Hemoglobinopathies: Current Practices for Screening, Confirmation and Follow-up
Check out a new guidance document designed to identify and catalogue best practices for hemoglobinopathy newborn screening and diagnostic testing.
- Page last reviewed: November 17, 2016
- Page last updated: November 17, 2016
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