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Category: NORD News
NORD Issues Statement on Increasing Use of CoPay Accumulator Programs in Health Plans
June 4, 2018
Washington, D.C., June 4, 2018 — The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on […]
Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally
November 28, 2017
Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases Washington, D.C., November 28, 2017 – Today, the National Organization for Rare […]
NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)
November 3, 2017
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 […]
New Study Examines Use and Cost of Orphan Drugs
October 18, 2017
Orphan Drugs Account for Only 7.9% of Pharmaceutical Spending in the U.S. Washington, D.C., October 17, 2017—Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in […]
Downloadable Hurricane Harvey Emergency Relief Resources
August 31, 2017
Hurricane Harvey has left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural disasters can be […]
President Obama Signs Advancing Hope Act
September 30, 2016
Washington, D.C., September 30, 2016 – Today, President Obama signed the Advancing Hope Act (S. 1878), extending the Rare Pediatric Disease Priority Review Voucher (PRV) program until December 31. “On behalf […]
$1.1 Billion in Federal Funding to Fight the Zika Virus
September 29, 2016
Washington, D.C., September 29, 2016 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement from […]
September 22, 2016
More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH Washington, D.C., September 22, 2016— The National Organization for Rare […]
The Hill publishes NORD op-ed: Congress must act now to help 15 million sick children
September 15, 2016
The Hill, a top U.S. political website, read by Congressional offices, the White House, political pundits, and more, today published the following op-ed by NORD President and CEO, Peter L. […]
September 13, 2016
The National Organization for Rare Disorders submitted comments to the Institute for Clinical and Economic Review (ICER) in response to their call for comments on how to improve their value framework […]
NORD Responds to AHIP Report on Orphan Drug Act
September 2, 2016
By Peter L. Saltonstall One of the most successful pieces of legislation ever passed by the Congress is the Orphan Drug Act of 1983 (ODA). It was intended to stimulate […]
NORD Publishes Expanded Access FAQ
August 15, 2016
NORD has published a new guide to help people and caregivers living with rare diseases understand expanded access and how to access unapproved medicines. In the guide, NORD answers frequently asked […]
NORD Issues Statement in Response to PDUFA VI Commitment Letter
July 21, 2016
On July 15, the Food and Drug Administration released the performance goals letter for the reauthorization of the Prescription Drug User Fee Act, also known as PDUFA VI. The PDUFA program […]
NORD Issues Statement as Senate Postpones Vote on Cures Legislation
July 14, 2016
The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), as the Senate announced it would not vote on its […]
July 13 Day of Action: Last Chance for Zika Funding
July 13, 2016
Time is running out – today may be our last chance before September for anything to happen on the critical Zika package. This Friday, Senators will depart D.C. for their 7-week […]
June 16, 2016
NORD, the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, applauds the Senate for authorizing medical foods coverage in the National Defense Authorization […]
Impact of the Orphan Drug Tax Credit for Rare Diseases
June 17, 2015
Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” a […]
NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative
May 21, 2015
NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and […]
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