Written by Lisa Sencen on 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 to the delay in consideration of the Senate Better Care Reconciliation Act:
“Today, Senate Leadership announced they will not hold a… Read More
Written by Jennifer Huron on 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 Cost Working Group which will be meeting for the first… Read More
Written by Heidi Ross on April 22, 2016
We are making progress throughout the country for the 1 in 10 Americans with rare diseases.
Here is a list of legislative initiatives that NORD and our network of advocates are actively participating in to better the lives of people and… Read More
Written by Jennifer Huron on April 15, 2016
This week, the Illinois House passed HB 4576. The House Bill seeks to establish a Rare Disease Commission that would give patients – many of whom are too young or sick to speak for themselves – a voice in the state government…. Read More
Written by Jennifer Huron on October 22, 2015
Leading Advocacy Organization Drives Health Policy Improvements for 30 Million Americans with Rare Diseases through Rare Action™ Network
With patient access to health care becoming increasingly dependent upon state policies, the National Organization for Rare Disorders (NORD)® has developed and released the first-ever State Progress Report to evaluate how… Read More