Understanding the Rare Disease Caregiver

Caregivers, an often overlooked part of the healthcare continuum, play a critical role in the world or rare diseases. But with this role, usually taken on by family members, comes physical, emotional, and financial stress. We spoke to Grace Whiting, Director of Strategic Partnerships for the National Alliance for Caregiving, her organization’s study of caregivers, the issues they face, and policy changes needed to better support them.