Many HCAOA member agencies provide care to children with serious illnesses. Please be sure to share this new resource, The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses, with your caregivers. The National Alliance for Caregiving in partnership with Global Genes and with support by Mallinckrodt Pharmaceuticals recently released this guidebook to provide caregivers with the support, services, and specialized information they need to care for a child with a rare and/or serious illness. The guidebook offers an extensive list of resources to help a caregiver in any situation throughout the entirety of their journey as a rare disease caregiver, compiled by those in the rare disease space and caregivers themselves.
The Guidebook covers: