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Holding Hands


Caring for someone with HE/AE can be especially challenging. Below are resources that can be used to help navigate being an HE/AE caregiver.

Resources for caregivers of children with AE/HE:

The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses

"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.

The extensive array of topics covered in this Guidebook (nearly 100) underscores the many aspects of life and care that are impacted when caring for a child with a rare disease. Fortunately, there are a wide variety of helpful resources and organizations available to support and direct Caregivers, many of which are also highlighted in this document."

Developed by the National Alliance for Caregiving and Global Genes.

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