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πŸ«‚ πŸ“˜ For Caregivers Day (Feb 17) Rare Disease Caregiving in America

  • 1.  πŸ«‚ πŸ“˜ For Caregivers Day (Feb 17) Rare Disease Caregiving in America

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    Posted 02-16-2023 15:52
    πŸ«‚ πŸ“˜  The National Alliance for Caregiving, in partnership with Global Genes,  present Rare Disease Caregiving in America (February 2018), a national study 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.  #caregiver

    Rare Disease Caregiving in America (February 2018) (PDF)
    Rare Disease Caregiving in America (February 2018) is a national research study capturing the experiences of more than 1,400 family caregivers of children and adults with a rare disease, condition, or disorder across 400 different diseases. Findings in this first-of-its-kind national snapshot paint a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources.

    Read more, find the report and resources here.

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    Daniel DeFabio

    Global Genes
    Director of community engagement
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