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. (more…)
Summer is right around the corner, which means hot days, grilling, more time outside, and of-course the inevitable rainy-day stuck inside. In preparation for those days, I am trying to compile a list of movies that could make up a “rare disease film festival.” Read More
Today, members of the NORD staff had the opportunity to meet a group of high-school advocates who are already making a difference to help raise awareness for rare diseases. (more…)
Each year NORD provides a list of suggested activities for Rare Disease Day. This year, one of those major projects is a nationwide campaign to help leaders of rare disease patient organizations — and those who support them — educate their state officials for Rare Disease Day 2013 (Feb. 28,… Read More
