Scroll
To Top

Archives for: December 22nd, 2020

The End of Surprise Medical Billing: NORD Applauds Bipartisan Progress to Protect Millions of Rare Disease Patients from Unexpected and Financially Crippling Medical Expenses

Written by Rose Gallagher on December 22, 2020

After more than a year of negotiations in Congress and advocacy from NORD and patient coalition partners, lawmakers on Capitol Hill have passed legislation to protect patients from surprise medical billing. This is a major win for rare disease patients and their families that will help protect them from… Read More

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

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

NORD Debuts Rare Disease Day 2020 Video

Written by Laura Mullen on February 26, 2020

This year, NORD has developed a brief video for Rare Disease Day featuring rare patients, caregivers and supporters sharing their thoughts on the importance of the day and relaying the rallying cry, “Show Your Stripes!”

Show Your Stripes takes its cue from the zebra, mascot of the… Read More