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Rare Disease Caregiving Impacts Heart + Finances – See Why

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What Does a Portrait of a Rare Caregiver Look Like?

The National Alliance for Caregiving, in partnership with Global Genes, recently released Rare Disease Caregiving in Americaa national study of 1,406 unpaid caregivers ages 18+ living in the US who provide care to a child or adult with a rare disease or condition. CNF proudly served on the advisory committee for this important project. Learn more at

Caregivers Need Care, Too!

Have you requested your free copy of the CNF Respite Care Notebook yet? If not, email us your mailing address and we’ll send you one or download it here.



Learn more about CNF initiatives specific to the rare child neurology community at: