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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

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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Over 140 Patient Organizations Support the Orphan Drug Tax Credit

Written by Lisa Sencen on September 14, 2017

Today, NORD joined over 140 patient organizations in sending a letter to Congress in support of the Orphan Drug Tax Credit (ODTC). We are extremely grateful to all those organizations that joined us and lent their support. It is vital that the Orphan Drug Tax Credit remains in place, and… Read More