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 >
I woke up this morning in a great mood. Something wonderful happened last night. Let’s see, what was it? Oh yeah, that Jeopardy question. Ugh. Then there was the realization that the moment was over, for good. Done and gone. So fleeting fame can be. read more >
Over the last couple of weeks, our community of cystinosis families has been enriched by an exchange of “med-art” that began with a Facebook post by Clinton Moore, a dad of a child with cystinosis. He shaped the morning dose of pills that his son, Chandler, takes into a smiley face. He then posted it to make other families smile. read more >