Rare disease caregivers are good at advocating for their family members, for research, and for the needs of rare disease patients broadly. What they often fail to do, though, is advocate for themselves. The National Alliance for Caregiving, in partnership with Global Genes, is conducting a first-of-its-kind study of rare disease caregivers to better understand the challenges they face and determine whether there are common issues they share that may warrant policy changes. We spoke to Grace Whiting, Interim CEO and Chief Operating Officer of the National Alliance for Caregiving, about the study, what the organizations are hoping to determine, and how the findings will be used.

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