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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 […]
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 […]
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 […]
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 […]
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