Patient Worthy was pleased to serve on the advisory committee for the development of this new resource.

Caring for a child with a rare disease can be scary and confusing; you may feel as if you’re lost or alone. To combat this issue, the National Alliance for Caregiving has released a new guidebook: “The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses.” The book contains resources, stories, support, and information for caregivers, along with instructions and advice for patient advocacy. 

About the Guidebook

This guidebook was created and released by the National Alliance for Caregiving alongside Global Genes. It’s intended to help caregivers of all different backgrounds and circumstances feel less alone and more prepared. 

The two organizations based their book on a 2018 survey of family caregivers and its resulting study: Rare Disease Caregiving in America. Of the 1,406 caregivers surveyed, 62% were caring for a child. Within this group, researchers discovered that a high level of expertise and specialized information are absolutely necessary to provide adequate care to a child with a rare disease. 

Beyond this study, the guidebook also drew upon the advice and experience of rare disease advocates, medical professionals, researchers, members of rare disease organizations, and other expert reviewers. 

The 59-page, free guide is available online, and it includes:

• Advice and insight into the diagnostic process, which helps families receive accurate diagnoses
  • Includes helpful websites, along with information on testing programs
• Information covering:
  • Genetic testing
  • Treatment and care coordination
  • Support groups
  • Clinical trials
  • Government support
  • Copay assistance
  • Treatment cost and other funding assistance
  • Empowering your child
  • Taking care of yourself and the rest of your family
  • Summer camps and other programs for children

This guidebook aims to provide insight and help to all caregivers of children with rare or serious illnesses, whether they are new or seasoned. You can read more about it here.