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

From The National Alliance for Caregiving

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.

Global Genes would like to thank the National Alliance for Caregiving and all the other Caregivers, organizations, and experts involved for calling attention to the unique needs of those caring for a child with a rare and serious illness, and for helping to develop this Guidebook as a resource.

Working in partnership with patient-advocacy and consumer-facing partners, NAC has been honored to contribute our expertise to a series of guidebooks intended to improve the caregiving experience.

Download the guide here