Written by admin on April 28, 2014
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…)
Written by admin on June 7, 2013
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
Written by admin on May 29, 2013
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…)
Written by admin on December 14, 2012
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