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Archives for: March 29th, 2018

NORD Reaction to Recently-Enacted Government Spending Bill

Written by Christina Jensen 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 Christina Jensen 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 Christina Jensen 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

Alone we are rare. Together we are strong.®

Copyright ©2019 NORD - National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.