March 3, 2020
NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum
Posted at March 3, 2020 08:00 am by Valaree DonFrancesco
NORD is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity is supported by Horizon Therapeutics’ #RAREis program.
NORD will spotlight one… Read More
February 27, 2020
Posted at February 2, 2020 08:10 am by Valaree DonFrancesco
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, Tyler Cummings.
Mark also used the video to… Read More
February 26, 2020
Posted at February 2, 2020 07:20 am by Valaree DonFrancesco
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 rare disease community, which is known for its distinctive… Read More
January 27, 2020
Posted at January 1, 2020 09:55 am by Valaree DonFrancesco
- Tell us a little bit about yourself! Where are you from?
I’m Allison Herrity and I’m from Arlington, Virginia!
- Where do you attend school and what are you studying?
I’m a senior at the George Washington University studying public health. I’ll also be staying at GW for an extra year after I graduate to complete an… Read More
December 2, 2019
Posted at December 12, 2019 08:05 am by Valaree DonFrancesco
Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and other gene-editing tools as future treatments for many rare diseases.
NORD is creating a new educational video on this topic, and we want to be sure… Read More