For those in the rare community, one of the few positives that have come from the global COVID-19 pandemic has been the wider availability of telehealth services. Through surveys, virtual discussion groups and direct advocacy efforts, NORD has continued to track rare patients’ and caregivers’ use of and experience with telehealth. The findings from NORD’s work are gathered in the publication “Ensuring Access to Telehealth for Rare Diseases” that is now available for download.

NORD encourages community members to share their COVID-19 telehealth experiences with us, as well as to send a note to your Senators and Representative asking them to protect rare disease patients in the next coronavirus relief package. We must work together to ensure access to telehealth remains available to rare disease patients.