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Trusted Resources: Evidence & Education
Scientific literature and patient education texts
State of Sickle Cell Disease
source: American Society of Hematology
year: 2016
summary/abstract:Over the past century, great advances have been made in the understanding and treatment of sickle cell disease (SCD). This first “molecular disease,” caused by a single gene mutation, has advanced the field of modern human molecular biology. Many important discoveries have been made, and some treatments developed. These discoveries have identified innumerable questions and opportunities to better understand and treat this complex disease. Yet, many basic scientific processes are still not fully understood, too few treatments have been developed, and most of the people who have SCD do not have access to these treatments which could improve the duration and quality of their lives. With profound concern about the unmet scientific opportunities and lack of access to high-quality care, a group of SCD stakeholders has convened and is eager to find remedies. This document outlines their analysis and details a comprehensive plan to address these issues.
The plan encompasses four priority areas – Access to Care in the United States, Training and Professional Education, Research and Clinical Trials, and Global Issues Related to SCD – which will be the focus of our collective efforts toward ultimately advancing SCD care, early diagnosis, treatment, and research.
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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.