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November 10, 2017

TOPIC: Advocacy, Featured News, Industry, Patients & Members, Research

NORD Issues Statement in Response to Senate Finance Committee’s Proposal to Weaken the Orphan Drug Tax Credit

Posted at November 11, 2017 02:26 pm by Christina Jensen

Washington, D.C., November 10, 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 release of the Senate Finance Committee’s proposal to substantially weaken the Orphan Drug Tax Credit (ODTC) within its Tax Cuts and Jobs Act:

“On behalf of the 30 million… Read More

November 2, 2017

TOPIC: Advocacy, Featured News, Patients & Members

NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)

Posted at November 11, 2017 12:58 pm by Christina Jensen

Washington, D.C., November 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 release of the Tax Cuts and Jobs Act, and the proposed repeal of the Orphan Drug Tax Credit (ODTC):

“Today, the House Ways and Means Committee released a… Read More

September 26, 2017

TOPIC: Advocacy, Featured News, Patients & Members

NORD Issues Statement on Senate Leadership’s Recent Update on “Graham-Cassidy” Proposal

Posted at September 9, 2017 06:09 pm by Christina Jensen

Washington, D.C., September 26, 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 regarding the latest effort to repeal and replace the Affordable Care Act:

“Senate Leadership announced today that they will not proceed with a vote on the most recent attempt to repeal and… Read More

September 19, 2017

TOPIC: Advocacy, Featured News, Get Involved, Patients & Members, Press Releases

NORD Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan

Posted at September 9, 2017 01:20 pm by Christina Jensen

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the “Graham-Cassidy” plan to repeal and replace the Affordable Care Act (ACA):

“The Senate is currently considering a proposal put forward by Senators Graham, Cassidy, Heller, and Johnson that would repeal and replace the Affordable… Read More

September 12, 2017

TOPIC: Featured News, Medical, Patients & Members, Press Releases

NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)

Posted at September 9, 2017 09:05 am by Christina Jensen

Washington, D.C., September 15, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Shprintzen Goldberg Syndrome (SGS). This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases,… Read More