Archives for: 2017

NORD is pleased to share the Rare Action 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 families with rare diseases.  Together, we are taking action in 42 states and the District of Columbia.  Let’s keep going – together, we are strong!   […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]