News

Time is running out – today may be our last chance before September for anything to happen on the critical Zika package.  This Friday, Senators will depart D.C. for their 7-week summer recess.  This is problematic because July and August in the U.S. are the worst months for mosquito and potential Zika activity. Today, July 13, […]

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 […]

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 […]

NORD, the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, applauds the Senate for authorizing medical foods coverage in the National Defense Authorization Act for Fiscal Year 2017 (S.2943) on Tuesday.  The bill now must be harmonized with the House version passed last month. “This is an important […]

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 before the Senate is out of session until after the November election. Senate Cures (also called the Senate Innovation Act for Healthier Americans) is the companion […]

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 in the bills being supported in both Massachusetts and Tennessee. Learn more about the bills that RareAction is tracking and supporting to improve the lives of […]

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, it felt like I was on that very road. Absolute nothingness for miles in every direction. So far the trip has covered about 3,000 miles, with […]

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 prevented our advocate and me from posting a few days ago). I like Tallahassee, it is one of few state capitals with the vibe of […]

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 miles later I made it to Denver. It was somewhat of a tedious drive with nothing much to gaze at, however, the payoff was worth it; […]

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 (a NORD member organization).  As a NORD State Ambassador, Beth is hoping to advance provider education for Syringomyelia and all rare diseases. Beth will be working to […]