-
Rare Action Network > About > News > NORD News
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 the increasing use of copay accumulator programs in health plans: “Recently, a number of health plans have started implementing, what are broadly known as, ‘copay […]
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 Disorders (NORD) is hosting a Save the Orphan Drug Tax Credit Rally for the rare disease community in response to the tax reform bill being debated in […]
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 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 […]
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 2016, according to a study issued today by the QuintilesIMS Institute. The study, commissioned by the National Organization for Rare Disorders (NORD), analyzed the role of the […]
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 even more detrimental. Together, NORD staff worked with our Texas Rare Action Network State Ambassador, Debbie Skolaski to create the Hurricane Harvey Emergency Relief Resources packet, a list of emergency […]
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 of the 15 million children with rare diseases, we thank the President for signing the Advancing Hope Act so that some of our most vulnerable […]
$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 President and CEO Peter L. Saltonstall following President Obama’s signature of the Continuing Resolution today. “On behalf of the 30 million Americans with rare diseases, […]
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 Disorders (NORD) is one of more than 300 organizations participating in the Rally for Medical Research Hill Day on September 22, uniting millions of Americans […]
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. Saltonstall, urging Congress to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program. The PRV program encourages the development of therapies for children with […]
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 development process. You can find NORD’s comments here. People with rare diseases have a uniquely important role to play in value framework development. Almost every input […]
Quick Search
Subscribe
Blog Categories
Archives