Written by Valaree DonFrancesco on February 27, 2020
Dance, lip-sync and comedy video creator Mark Anastasio spoke in a somewhat different tone in a recent Tik Tok video for his 6.3 million followers. The content of the video? Raising awareness for the rare disease community in memory of his teacher’s son,… Read More
Written by Valaree DonFrancesco on February 26, 2020
This year, NORD has developed a brief video for Rare Disease Day featuring rare patients, caregivers and supporters sharing their thoughts on the importance of the day and relaying the rallying cry, “Show Your Stripes!”
Show Your Stripes takes its cue from the zebra, mascot of the… Read More
Written by Valaree DonFrancesco on January 16, 2020
Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease Day decree: Show Your Stripes! This campaign takes its cue from the majestic zebra, known for its distinctive stripes…. Read More
Written by Lisa Sencen on March 6, 2019
This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events, attendance at events, extensive media coverage, robust social media engagement and beyond, NORD is very proud… Read More
Written by Lisa Sencen on February 25, 2019
The following story was submitted by Katia Luedtke in honor of Rare Disease Day. In this story, Katia shares her family’s journey of searching for and receiving a diagnosis for their son, Connor, of Snyder-Robinson Syndrome (SRS).
Share your story for Rare Disease Day here.
Our… Read More