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Archives for: October 15th, 2020

NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

Written by Jennifer Huron on October 15, 2020

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… Read More

NORD Releases Four Guiding Principles on Telehealth Issues

Written by Laura Mullen on August 17, 2020

The COVID-19 pandemic has had a huge impact on the rare disease community. NORD has heard from countless patients over the last few months about how this crisis has added to the already significant challenges that come from living with, or caring for, someone with a rare… Read More

The NORD Policy Team Wants to Hear About Your COVID-19 Telehealth Experience

Written by Laura Mullen on July 6, 2020

During the pandemic, many rare disease patients have been diligent about staying home as social distancing continues to be critical to minimize the spread of the coronavirus; as a result, many patients have switched to receiving ongoing care through telehealth. Telehealth is generally described as a virtual communication used to… Read More