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Archives for: February 29th, 2020

Savannah’s Story in honor of Rare Disease Day

Written by Valaree DonFrancesco on February 29, 2020

I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack in the summer and now am in the thick of my second one (a relapse), and… Read More

Bridget’s Story in honor of Rare Disease Day

Written by Valaree DonFrancesco on February 29, 2020

I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding, which immediately had the delivering doctor puzzled. I was then rushed to a different hospital, four… Read More

Ashlee’s Story in honor of Rare Disease Day

Written by Valaree DonFrancesco on February 29, 2020

I was diagnosed with primary immunodeficiency when I was four years old. With primary immunodeficiency, the assumption is that “it’s just an infection” or that it’s normal because “kids get sick.” The problem was that I was never getting better and… Read More

NORD Debuts Rare Disease Day 2020 Video

Written by Laura Mullen 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