On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st Century Cures Initiative outlining ways to improve the discovery, development, and delivery of medical treatments in the U.S. read more >
The National Organization for Rare Disorders (NORD) focused a spotlight on individuals and families who display great courage as they live with rare diseases at its Portraits of Courage Celebration last night.
Today, along with many others, I was horrified to learn that celebrities, including Shaquille O’Neal, were mocking a man living with ectodermal dysplasia on their social media pages. Read the story. read more >
With a Portraits of Courage theme, NORD will honor patients, parents and caregivers — many of whom will be present to participate in the program — at its annual gala on Thursday, May 8, at the National Building Museum in Washington DC. read more >
From Left to Right: Stephanie Bozarth, Andrew Emmett, Sandy Robinson, Peter L. Saltonstall, Richard Zyne, Charles Mohan
NORD recently hosted a Capitol Hill briefing on the topic “Rare Diseases in a Changing Healthcare Landscape”. Keeping our elected officials informed and aware is a critically important, and this briefing was very well received. read more >