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February 28, 2020

TOPIC: Featured News, Medical, Press Releases, Research

NORD Launches Natural History Study for Undiagnosed Rare Diseases

Posted by Valaree DonFrancesco

Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease Registry, a new study to collect de-identified information about hard-to-solve medical cases that will enable researchers to perform analyses at a scale previously not possible.

“With the Undiagnosed Rare Disease… Read More

February 27, 2020

TOPIC: Advocacy, Get Involved, Rare Disease Day

Tik Tok Influencer Mark Anastasio Challenges Connecticut Students to Stripe Out Their Schools

Posted 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

TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members, Rare Disease Day

NORD Debuts Rare Disease Day 2020 Video

Posted by Laura Mullen

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

February 25, 2020

TOPIC: Advocacy, Patient Stories, Patients & Members, Rare Disease Day

Why Rare Disease Day Is Important to Me, by Chris Madden

Posted by Laura Mullen

Does anyone ever think that they may have a rare disease? Well, I for one definitely didn’t. Here I was, having my annual check-up with my very astute dermatologist, who noticed an unusual clustering of red spots on the palms of my hands. She immediately sent me to a local New York hematologist who, after several blood… Read More

February 24, 2020

TOPIC: Uncategorized

#NORDinthenews: NORD’S Mary Dunkle interviewed on WFAN Sports Radio on all things rare disease

Posted by Laura Mullen
As a lead up to #RareDiseaseDay, NORD’s Education Senior Advisor Mary Dunkle was interviewed live on WFAN Sports Radio’s “Bob Salter Show” on Sunday, February 23. The 40 minute interview touched on topics including rare disease facts, NORD’s history and mission, the significance of Rare Disease Day and the upcoming Rare Disease Day: Mission 2020 event at the International… Read More