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Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Parents Handbook for Sickle Cell Disease
source: State of California Department of Health Services, Genetic Disease Branch
year: 2015
summary/abstract:This is a parents handbook for sickle cell disease from The Virginia Sickle Cell Awareness Program. It contains:
-Parent Handbook Part I
-Parent Handbook Part II
Part I is relevant for parents with kids from birth to six years of age, and Part II is relevant for parents with kids of age six to eighteen years.
This handbook was developed in response to requests from parents of children with sickle disease for more detailed information that they could refer back to as needed. The parents’ role in early identification of infection and other problems is difficult yet so critical to the health of their child particularly during the first few years of life.
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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.