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Archives for: February 9th, 2022

Rare Disease Day: Bradley’s Story

Written by Maia Craig on February 9, 2022
A photo of Bradley wearing a blue and white shirt and mint green shorts

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Bradley’s journey with Infantile Myofibromatosis. If you want to share your rare story in honor of Rare Disease Day, visit NORD’s Read More

How to Light Up for Rare – Rare Disease Day 2022

Written by Maia Craig on December 14, 2021

Rare Disease Day is a day of awareness for the over 7,000 rare diseases that impact over 300 million people globally! 

As the US sponsor for Rare Disease Day, NORD is leading the call to light up the country in rare disease colors and unite both the rare disease community and the country as a whole. The more buildings, landmarks and… Read More

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