On February 28, National Alliance for Caregiving (NAC) released a report entitled, Rare Disease Caregiving in America. Over 1400 unpaid caregivers residing in the United States who provide care for a child or an adult with a rare disease or condition participated in the study. Over 400 unique conditions or diseases were captured. This report outlines the family connections, the scope of care provision in terms of time and coordination, the impact on caregivers, and issues policy recommendations.
On Wednesday, April 18 at 4PM Eastern Time (3PM Central Time), the NAC will hold a webinar on the report findings. Register here for the webinar.