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 >
Posted at April 22, 2014 2:53 pm by E. Michael D. (Mike) Scott
The other day I contributed a post to this blog that mentioned the opening of a new “rare cancer” treatment center in Greenville, SC. Little did I know that I would have more to say on this topic so soon. However, … read more >