Rare Disease Caregivers and Families Face Life-Altering Challenges: Support Services Rarely Used

February 28, 2018

Findings from a first-of-its-kind national snapshot of caregivers of individuals with a rare disease or condition paint a picture of friends and families facing emotional, financial, physical, and social strain with little support from outside resources.

The National Alliance for Caregiving, in partnership with Global Genes, released findings of an online study by Greenwald & Associates, conducted in late 2017, of 1,406 unpaid caregivers ages 18 and over living in the United States who provide care to a child or adult with a rare disease or condition. It is estimated that at least 25 million Americans currently have a rare disease or condition; the National Institutes of Health estimates that there are approximately 7,000 rare diseases.

“This study shows that rare caregiving fundamentally alters the daily life of friends and family for many years,” said C. Grace Whiting, J.D., President and CEO of the National Alliance for Caregiving. “Most rare caregivers are providing time-intensive care – 8.9 years on average, and it is a demanding commitment.”

The report and related materials are available at http://www.caregiving.org/rare.

Read the full press release here.

This information was taken directly from the National Alliance for Caregiving.