-
RareAction Network > About > News > 2017
Archives for: 2017
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 […]
Quick Search
Subscribe
Blog Categories
Archives
