A challenge that I have been faced with is living with a rare disease called Cowden Syndrome. What this means is that I was born… Continue reading Embracing the struggles
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Hello everyone! My name is Rachele, I am 23 years old from Italy. As part of the rare disease day awareness campaign, I’d like to… Continue reading Più unica che rara
My baby was born on the 6th September 2021 by emergency caesarean. We had no clue that he would be so unique, just told that… Continue reading My Unique boy
When I was born my mother gazed down at me and was softly stroking my fingers. Right in front of her eyes she watched a… Continue reading Your Blister Sister
Here’s to the long story that leads me to the start. On the 22nd I became an above-knee amputee and for the last 96 days… Continue reading A Short Story Long
*Spanish below* My daughter, Helena, is a lovely Mexican 7-year-old girl that has had to face extraordinary challenges and uncertainty until was finally diagnosed, in… Continue reading Helena is one of a kind, and 1 in a million!
We are a nonprofit organization that embraces the at-risk population in the community. To provide mentors, education, and transformation. To support community all-inclusiveness. We will… Continue reading Community Heroes
VectivBio is global, clinical-stage biotechnology company committed to life-transforming medicines for patients living with severe, rare diseases. For Rare Disease Day 2023, we will be… Continue reading VectivBio
The Sampson Lab is a kidney research lab at Boston Children’s Hospital that is using genomics to discover the causes, treatments, and even cures of… Continue reading Sampson Lab