Cure MCOPS12 is a registered nonprofit organization dedicated to improve the lives of children and families affected by MCOPS12. MCOPS12 is an ultra-rare neurological disease… Continue reading Cure MCOPS12
Results for "light up for rare"
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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
Citrin Foundation is a research-driven, non-profit organization set up in 2016 to tackle citrin deficiency, a monogenetic condition that is an inborn error of metabolism,… Continue reading Citrin Foundation
*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