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The impact of rare disease on family caregivers
Findings from a first-of-its-kind national snapshot of caregivers of individuals with a rare disease or condition paint a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources.
The National Alliance for Caregiving, in partnership with Global Genes, released findings of an online study by Greenwald & Associates, conducted in late 2017, of 1,406 unpaid caregivers ages 18 and over living in the United States who provide care to a child or adult with a rare disease or condition. It is estimated that at least 25 million Americans currently have a rare disease or condition; the National Institutes of Health estimates that there are approximately 7,000 rare diseases.
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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.