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Kyra, who has sickle cell, had suffered a devastating stroke — her second — a common complication of this inherited disease, which afflicts 100,000 Americans, most of them Black. She most likely would never have had the strokes if she had been given an annual screening test and treatment proven more than two decades earlier to prevent nine out of 10 strokes in children with the disease and recommended by the National Institutes of Health. But like countless other children with sickle cell, she was never screened.
This is a paradoxical moment for people who have this painful, deadly disease. For the first time, gene therapies that have advanced through clinical trials offer the real possibility of a cure.
education & researchHealth Literacy and Disease-Specific Knowledge of Caregivers for Children With Sickle Cell DiseaseThis study was conducted to measure the ...
videos & visualsStigmatization of Sickle Cell Disease – Selina Olwenda-Chairperson Children Sickle Cell Foundationhttps://www.youtube.com/watch?time_conti...
education & researchOpioid management strategy decreases admissions in high-utilizing adults with sickle cell diseaseBackground: A subset of adults with sic...
people & placesThe Sickle Cell Council of New MexicoThe Sickle Cell Council of New Mexico se...
Community CenterToday’s Faces of Sickle Cell Disease: John Tisdale, MDFor many years, John Tisdale has been wo...
news & eventsNHLBI Stepping Up Efforts to Apprise SCD Patients of Therapies and TrialsWide interest in a CBS 60 Minutes story ...
people & placesIndividuals with Disabilities Education Act (IDEA)The U.S. Department of Education’s Ind...
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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.