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.
Sickle Cell Disease in California
Sickle Cell Disease in California (for Providers)
Sickle Cell Disease in Georgia
Sickle Cell Disease in Georgia (for Providers)
Sickle Cell Disease in Michigan
Sickle Cell Disease in North Carolina
Sickle Cell Disease in North Carolina (for Providers)
Sickle Cell Disease in New York
Sickle Cell Disease in New York (for Providers)
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
What you should know about sickle cell disease.
Fact Sheet: Sickle Cell Disease and College
Nine steps to living well with sickle cell disease in college.
Fact Sheet: Sickle Cell and Pregnancy
What you should know about sickle cell disease and pregnancy.
Fact Sheet: Sickle Cell Trait
What you should know about sickle cell trait.
Living Well With Sickle Cell Disease
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
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
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.