Archives for: 2016

Washington, D.C., September 30, 2016 – Today, President Obama signed the Advancing Hope Act (S. 1878), extending the Rare Pediatric Disease Priority Review Voucher (PRV) program until December 31. “On behalf […]

Washington, D.C., September 29, 2016 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement from […]

Unanimous vote extends the Rare Pediatric Disease Priority Review Voucher Program with important policy changes through December Washington, D.C., September 23, 2016 – On Thursday, the Senate reached an important compromise […]

More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH Washington, D.C., September 22, 2016— The National Organization for Rare […]

The Hill, a top U.S. political website, read by Congressional offices, the White House, political pundits, and more, today published the following op-ed by NORD President and CEO, Peter L. […]

The National Organization for Rare Disorders submitted comments to the Institute for Clinical and Economic Review (ICER) in response to their call for comments on how to improve their value framework […]

By Peter L. Saltonstall One of the most successful pieces of legislation ever passed by the Congress is the Orphan Drug Act of 1983 (ODA).  It was intended to stimulate […]

NORD has published a new guide to help people and caregivers living with rare diseases understand expanded access and how to access unapproved medicines. In the guide, NORD answers frequently asked […]

On July 15, the Food and Drug Administration released the performance goals letter for the reauthorization of the Prescription Drug User Fee Act, also known as PDUFA VI.  The PDUFA program […]

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 […]

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), as the Senate announced it would not vote on its […]

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 […]

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 […]

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 […]

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 […]