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Archives for: August 17th, 2020

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

CZI Grants to NORD and EURORDIS Support Organizational Capacity Building and Rare Disease Day Campaigns

Written by Laura Mullen on July 16, 2020

Today, the Chan Zuckerberg Initiative (CZI) announced $1.3 million in funding to support the global rare disease community through two distinct grants to NORD and EURORDIS-Rare Diseases Europe. These grants will support organizational capacity building programs and awareness campaigns for Rare Disease Day, respectively, and are part of CZI’s… 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