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Scientific literature and patient education texts
Sickle Cell Disease Health Disparities
source: CDC Foundation
year: N/A
summary/abstract:Sickle cell disease (SCD) is the world’s most common genetic disease, affecting approximately 100,000 people in the United States. As a group, people with SCD experience worse health outcomes compared to other diseases and have access to fewer health resources. This lack of equality is termed a health disparity.
Through a partnership with the Centers for Disease Control and Prevention’s Division of Blood Disorders, Tracking California and the Georgia Health Policy Center, the CDC Foundation is implementing the Sickle Cell Data Collection (SCDC) program to collect health information about people with SCD to study long-term trends in diagnosis, treatment and healthcare access. The SCDC program aims to use study findings to inform policy and health care changes that decrease health disparities for people with SCD.
The project is receiving funding support from Pfizer Inc., Bioverativ and Global Blood Therapeutics and is active in California and Georgia. Additional support is needed to expand the program to all of the United States to improve the disparate state of SCD.
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.