Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking… Read More
Save the date for the 2016 NORD Summit! Attendees can look forward to:
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
A win for the rare disease community
Yesterday, the U.S. Senate passed the Ensuring Access to Clinical Trials Act of 2015 (S 139), which NORD has supported. The bill would make permanent the Improving Access to Clinical Trials Act of 2009 (IACT). Without… Read More
The diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with MF have scar tissue buildup in their bone marrow, which prevents normal blood cells from being produced. Since blood cell… Read More
