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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 Releases Four Guiding Principles on Telehealth Issues

Written by Valaree DonFrancesco 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

NORD Reaction to Recently-Enacted Government Spending Bill

Written by Lisa Sencen on March 29, 2018

After months of debate, Congress passed an omnibus spending bill last week to fund the government through September 30, 2018. Within this legislation, there are both exciting investments in critical programs for the rare disease community as well as disappointing policy omissions from the final package.

For example, we had greatly… Read More

Your Help is Needed to #SaveCHIP

Written by Lisa Sencen on January 10, 2018
Today, advocates across the country are joining together to #SaveCHIP!
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