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Category: RareAction Network News
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 Orphan Drug Modernization Plan: “NORD is grateful to FDA and its recently-appointed Commissioner, Dr. Scott Gottlieb, for its commitment, announced June 29, to eliminating the orphan designation […]
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 to the delay in consideration of the Senate Better Care Reconciliation Act: “Today, Senate Leadership announced they will not hold a vote this week on the Better […]
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 the release of the Senate Leadership’s Better Care Reconciliation Act of 2017 discussion draft: “Senate Leadership today released a discussion draft of the Better Care Reconciliation Act of […]
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 urge the U.S. Senate to protect lifesaving health care for the millions of children and adults with rare diseases by opposing any legislation that would […]
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 members of Congress urging them to swiftly reauthorize the FDA user fees. The letter, in part, reads, “The chronic and rare disease and disability patient […]
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 to the passage of the American Health Care Act: “Today the House of Representatives passed American Health Care Act (AHCA). We are very disappointed the […]
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 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 […]
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 or sick to speak for themselves – a voice in the state government. The bill is awaiting Governor Bruce Rauner’s signature before it is passed […]
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 for Medical Research Capitol Hill Day. Federal funding for medical research is critical to the health and well-being of all Americans, especially for the 1 in 10 living […]
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 Cost Working Group which will be meeting for the first time this month. As part of its participation in this meeting, NORD is supporting the […]
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