source: National Alliance for Caregiving (NAC)
It is estimated that more than 30 million Americans currently have a rare disease or condition. Of these, 50 percent are children under the age of 18. In 2018, The National Alliance for Caregiving (NAC) published Rare Disease Caregiving in America in partnership with Global Genes to describe the journeys, challenges, joys, and contributions of rare disease caregivers. The study found that rare diseases have a profound impact on the lives of caregivers and inspired the development of this guidebook. This Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses is designed to help patients, caregivers, and families of children and young adults during their experience with a rare and/or serious illness by offering effective resources that have helped other caregivers in similar situations.
For the purpose of this guidebook, rare and/or serious illnesses encompass medically complex conditions and diseases that might limit or shorten the life of a child. Family caregivers include parents, guardians, siblings, grandparents, other family members, friends, and other people who provide unpaid care to a child or children below the age of 18 with a rare and/or serious illness.