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October 13, 2017

TOPIC: Events, Press Releases

Nominations Open!

Posted by Jennifer Huron
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Danbury, CT and Washington, D.C., October 13, 2017—Do you know a person or company that is making a difference in the fight against rare diseases?  Submit a nomination for the 2018 Rare Impact Awards by January 12:  rarediseases.org/rare-impact-awards.

The Rare Impact Awards celebrates efforts to help the 30 million Americans with rare diseases who, by the very nature of their… Read More

December 18, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement in Response to Congressional Consideration of the Tax Cuts and Jobs Act Conference Report

Posted by Christina Jensen

Washington, D.C., December 18, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the upcoming congressional consideration of the Tax Cuts and Jobs Act Conference Report:

“This week, Congress will consider and potentially pass… Read More

December 14, 2017

TOPIC: Featured News, Patients & Members

Together, we can be stronger for those that need us.

Posted by Christina Jensen
Dear Rare Disease Community Member,
Wow! What an exciting time to be involved with rare diseases. Never before has there been so much progress in diagnosing rare diseases and in the availability of new treatments! 2017 promises to be another record year in terms of new therapies becoming available for patients with rare diseases.
So as we enter 2018 we at NORD are… Read More

December 7, 2017

TOPIC: Advocacy, Featured News

Over 160 Patient Organizations Reemphasize Support for the Orphan Drug Tax Credit

Posted by Christina Jensen
With the Senate and House versions of the Tax Cuts and Jobs Act heading to a conference committee, the future of the Orphan Drug Tax Credit (ODTC) is at stake.
Today, NORD joined over 160 patient organizations in sending a letter to the tax reform conference committee in emphatic support of strengthening the ODTC provision, or at the very least,… Read More

December 2, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement in Response to Senate Vote on the Orphan Drug Tax Credit

Posted by Christina Jensen
Washington, D.C., December 2, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the Senate passage of its Tax Cuts and Jobs Act:
“Today, the Senate voted to substantially diminish the Orphan Drug Tax Credit as part of its Tax Cuts and… Read More

November 30, 2017

TOPIC: Featured News, Medical

NORD Publishes Information for Physicians and Patients on Three Rare Diseases

Posted by Christina Jensen

Washington DC, Thursday, November 30 — The National Organization for Rare Disorders (NORD) has published new physician guides to promote diagnosis and treatment for patients with three rare medical conditions: hepatocellular carcinoma (HCC), acute myeloid leukemia (AML) and pigmented villonodular synovitis (PVNS).

NORD has also published corresponding reports on the three conditions for patients and their… Read More