The National Alliance for Caregiving, in collaboration with Global Genes, invites you to attend a House policy briefing on the recently released research study, Rare Disease Caregiving in America. This important new study captures 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 paint a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources. The briefing will explore policy recommendations and will highlight the unique challenges facing rare disease caregivers across the United States.
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Earlier Event: May 16ONS Advocacy Day Reception
Later Event: May 17Rare Disease Caregiving in America: Senate Briefing