Category: RareAction Network News

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 […]

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 […]

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 […]

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 […]

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 […]

As members of our South Carolina and North Carolina RareAction Network, we hope you can join us for one of our upcoming RareAction Network (RAN) Luncheons. These are free meetings that [...]

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 […]

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 […]

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 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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 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 […]

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, […]

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 […]

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 […]

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 […]

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 […]