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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 […]
August 23, 2017
To help drive the efforts of the RareAction Network℠, NORD launched the State Ambassador Program. State Ambassadors are volunteers in a leadership position responsible for establishing and building a strong […]
Make Your Voice Heard During NORD’s Days of Action
July 26, 2017
Senate in Deliberation TODAY! Yesterday, the Senate voted 51 to 50 to move forward with debate on repealing and replacing the Affordable Care Act (ACA). This is concerning because every […]
FREE RareAction Network Meetings in the Carolinas this September
July 20, 2017
Protecting Your Healthcare Coverage
July 18, 2017
The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system. Before […]
NORD Issues Statement Regarding the Release of Revised Draft of the Better Care Reconciliation Act
July 13, 2017
Washington, D.C., July 13, 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 […]
July 12, 2017
Washington, D.C., July 12, 2017 – The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) commend the House of Representatives for passing the FDA Reauthorization Act (FDARA) […]
NORD RareAction Network℠ Releases Summer 2017 State Policy Legislative Tracker
June 30, 2017
NORD is pleased to share the RareAction Network’s Summer 2017 State Policy Legislative Tracker. This document shows, state-by-state, which legislation we are tracking to help improve the lives of people and […]
NORD Issues Statement on the FDA’s Orphan Drug Modernization Plan
June 29, 2017
Washington, D.C., June 29, 2017 — The following statement was issued today by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), following the FDA’s announcement of its […]
June 27, 2017
Washington, D.C., June 27, 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 […]
NORD Issues Statement on the Better Care Reconciliation Act of 2017
June 22, 2017
Washington, D.C., June 22, 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 […]
NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage
June 20, 2017
Washington, D.C., June 20, 2017 – The National Organization for Rare Disorders (NORD), an independent nonprofit organization representing the 30 million Americans with rare diseases, has launched a nationwide campaign to […]
Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements
May 8, 2017
Washington, D.C., May 8, 2017—On Friday, the National Health Council (NHC) and the National Organization for Rare Disorders (NORD), submitted a letter from more than 120 patient advocacy organizations to […]
NORD Issues Statement on Today’s Passage of the American Health Care Act
May 4, 2017
Washington, D.C., May 4, 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 […]
May 1, 2017
CALL TO ACTION: Congress could vote this week – please take a minute to phone your legislators and ask them to vote no (click) Washington, D.C., May 1, 2017—The National […]
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 23, 2016
Unanimous vote extends the Rare Pediatric Disease Priority Review Voucher Program with important policy changes through December Washington, D.C., September 23, 2016 – On Thursday, the Senate reached an important compromise […]
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 […]
Advocacy Alert: Illinois Rare Disease Commission Bill
July 15, 2016
UPDATE: July 11, 2016 Illinois HB 4576 is close to passing! This bill would establish a Rare Disease Commission that would give patients – many of whom are too young […]
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 […]
Register: Rally for Medical Research Hill Day 2016, Sept. 21-22
June 29, 2016
Save the date for Sept. 21-22 for a nationwide day of action! Join NORD and 300+ partner organizations as we ‘rally’ for medical research as part of the annual Rally […]
June 22, 2016
NORD has recently become a member of a coalition of patient groups in Oregon seeking to reduce out-of-pocket drug costs for patients. The Oregon legislature recently created a Prescription Drug […]
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 […]
Today, Tell Congress We Need #CuresNow
June 7, 2016
Today, June 7, join rare disease advocates around the country and tell your Senators to support the Senate Cures Legislation. This month is the last chance for Senate Cures to pass […]
RareAction Network℠ Releases May/June State Policy Legislative Tracker
May 31, 2016
RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases. In this version of the State Policy Legislative Tracker, there is an increase […]
Rare Action Road Tour, Oklahoma
July 29, 2015
Greetings from Oklahoma, The awesome folks in the NORD marketing department created the snazzy logo and imagery that you see above (and in all previous posts). Driving through Oklahoma today, […]
Rare Action Road Tour, Tallahassee
July 28, 2015
Greetings from Tallahassee, As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules […]
July 27, 2015
Greetings from Denver, As the road tour heads further west, the distances between stops grow longer and longer. More time in the car means less time to blog. But, 10 hours and 632 […]
Rare Action Road Tour Takes on Georgia
July 23, 2015
Greetings from Atlanta, Georgia. I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of Worldwide Syringomyelia & Chiari Task Force […]
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 […]
NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based Advocacy
March 16, 2015
NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication from the National Coordinating Center […]
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