Rare Caregivers Guidebook

June 29, 2023

Being a Caregiver for a child with a rare disease or other serious medical condition can be both enormously gratifying and extremely challenging. For most, the experience is life-altering, and for some, all-consuming. In particular, the long and winding diagnostic odyssey and daily complexity of navigating care, treatment and support services can be overwhelming.

Rare Caregivers often must advocate for equitable and timely access to diagnostic testing, medical specialists, trials and the latest treatments, and become experts in their disease, researchers, innovators and entrepreneurs, organizers, fundraisers, policy wonks and thought leaders – sometimes all simultaneously — while being loving and available partners, parents and siblings.

The Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts.

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