Portrait of a Rare Caregiver
A one-page snapshot of the findings from the Rare Disease Caregiving in America study.
Appendix B – Full List of Rare Diseases, Conditions, or Disorders
This is the list of rare diseases, disorders, and conditions captured in the Rare Disease Caregiving in America research study.
Appendix A – Rare Caregivers Questionnaire
This is the survey questionnaire that was used in the Rare Disease Caregiving in America research study.
Rare Disease Caregiving in America (February 2018)
Rare Disease Caregiving in America (February 2018) is a national research study capturing the experiences of more than 1,400 family caregivers of children and adults with a rare disease, condition, or disorder across 400 different diseases. Findings in this first-of-its-kind national snapshot paint a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources.
