The impact of rare disease on family caregivers | oneSCDvoice
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The impact of rare disease on family caregivers


It always hurts when a loved one gets sick. However, the emotional toll and stress increases when you are the primary caregiver for a close family member or friend living with a rare condition for which effective treatments and sufficient support services may be lacking.

The National Alliance for Caregiving (NAC), in partnership with Global Genes, a rare-disease advocacy organization, hope to glean greater insights into just what challenges unpaid caregivers of loved ones with rare conditions are facing. The groups have joined forces to survey more than 1,400 American adults currently providing unpaid care to a child or adult with one of more than 400 rare conditions.

 

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