World Sickle Cell Awareness Day

SCD is a serious condition that affects people around the world. Due to the severity of health complications associated with SCD there is a need for increased knowledge and awareness about the disease.

World Sickle Cell Awareness Day is June 19. This annual event commemorates the date in 2008 when the General Assembly of the United Nations adopted a resolution recognizing sickle cell disease (SCD) as a public health concern. World Sickle Cell Awareness Day provides an opportunity to increase understanding of SCD and how the disease affects individuals and families worldwide.

Facts about SCD:

• SCD is an inherited group of red blood cell disorders.
• Among people with SCD, "sickle" or abnormally shaped red blood cells get stuck in small blood vessels and block the flow of blood and oxygen to organs in the body. These blockages can cause repeated episodes of severe pain, organ damage, and serious infections, or even stroke.
• It is estimated that SCD affects 90,000 to 100,000 people in the United States, mainly Blacks or African Americans. The disease occurs among about 1 of every 500 Black or African-American births and among about 1 out of every 36,000 Hispanic-American births.
• SCD affects millions of people throughout the world and is particularly common among those whose ancestors come from sub-Saharan Africa; regions in the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey.

The Global Impact of SCD

SCD is a significant cause of mortality and morbidity that merits closer consideration. The World Health Organization (WHO) has estimated that SCD contributes to 5% of the deaths of children younger than 5 years of age in some African countries. While an increasing proportion of affected children now survive past 5 years of age, many remain at risk of premature death. With early detection and use of public health interventions such as penicillin, many of these deaths can be prevented. Additionally, the burden of this disease can be reduced with increased global resources and effective partnerships.

2011 World Sickle Cell Awareness Day: Educate and Unite

In effort to increase knowledge about the global burden of SCD among the international community, CDC and the Sickle Cell Disease Association of America (SCDAA) have partnered to host World Sickle Cell Awareness Day activities June 23 and 24, 2011, at the Georgia World Congress Center in Atlanta, Georgia.s

The theme of the World Sickle Cell Awareness Day event—Educate and Unite—highlights the need to increase awareness of the global impact of SCD and the importance of uniting global support to promote and improve the health of people with SCD, with the specific aim of achieving United Nations Millennium Development Goal 4 to reduce child mortality (i.e., children younger than 5 years of age) by 2015.

World Sickle Cell Awareness Day will bring together approximately 300 guests from around the globe, including policymakers, health care providers, public health practitioners, and community advocates and others to discuss the impact of SCD worldwide.

To learn more about the global impact of SCD, please join CDC and SCDAA for World Sickle Cell Awareness Day in Atlanta.

What is CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) doing about SCD?

Determining How Many People Have SCD
Currently, there are no data systems in the United States to determine the number of people that have SCD and other hemoglobinopathies (disorders affecting red blood cells), nor to fully describe how these conditions affect an individual's health. CDC is working with the National Heart, Lung, and Blood Institute to plan and implement a pilot data collection system for hemoglobinopathies called RuSH—the Registry and Surveillance System for Hemoglobinopathies.

Educating People About SCD
NCBDDD strives to educate people about SCD by providing free materials to families affected by the disease. These materials discuss how to live well with SCD, how to prevent infections, and when to see the doctor. In addition, CDC is working to raise awareness of SCD among the community at large. This effort will be particularly helpful to groups such as teachers and other nonmedical professionals who care for or work with people with SCD.

Exploring Opportunities: SCD Working Group
CDC has also begun an agency-wide SCD multidisciplinary working group to explore opportunities to address unmet needs in research, surveillance, and health education. The working group will unite the efforts and energies of all groups within CDC that are working on this disease.

The goals of the SCD working group are to:

• Provide information and increase awareness of SCD and sickle cell trait at CDC and among external audiences such as health care providers, community organizations, affected patients and their families, and the general public.
• Increase dialogue and collaboration between CDC and key partners in the sickle cell community, including other federal partners such as the National Institutes of Health and the Health Resources and Services Administration.
• Increase research and surveillance to determine prevalence of SCD, develop better management guidelines, and more effectively monitor complications of the disease.

More Information

• Sickle Cell Disease - CDC's National Center on Birth Defects and Developmental Disabilities
• Listen to a Podcast: Sickle Cell Disease: What You Should Know [PODCAST - 6:36 minutes]
• Test Your Knowledge: Sickle Cell Quiz
• Facts About Sickle Cell Disease
• Facts About Sickle Cell Trait
• Tips for Healthy Living with Sickle Cell Disease
• Information for Health Professionals