Exploring the Power of Rare – Welcome to the World of Rare Diseases! Although we humans may share 99.9% similarity, the 0.1 % variance holds an incredible spectrum of information about our unique traits – from genetics to disease risks! It’s remarkable how much impact this tiny difference can make in the world. Those affected […]
To help raise awareness of rare disease dyskeratosis congenita, and other telomere biology disorders caused by short telomeres, Jeni has shared her experience this Rare Disease Day. My name is Jeni Colter. At fifty years old, I have many things; A wonderful husband, two great kids, a house, two dogs and very short telomeres. Very, […]
To help raise awareness of rare disease dyskeratosis congenita, Julian’s mom Mayra has kindly shared his journey through 4 stem cell transplants this Rare Disease Day. At the age of 3, our son was diagnosed with a rare genetic disorder called, dyskeratosis congenita. We were really fortunate our search led us to the Jimmy Fund […]
To mark Rare Disease Day, we have a guest blog from Mike who is kindly willing to share his experience with familial dyskeratosis congenita. Hello, my name is Mike and I have a rare disease. It is called Dyskeratosis Congenita (DC) and it runs in my family. My father and my uncle (his twin) had […]
Durhane Wong-Rieger, President & CEO of CORD (Canadian Organization for Rare Disorders), has kindly shared this guest blog explaining why this year is so important for CORD and how they will be getting involved with Rare Disease Day 2020. Rare Disease Day 2020 – A Significant Watershed Every four years, International Rare Disease Day falls […]
Now in its 12th year, Rare Disease Day will be celebrated globally on February 29 2020. Here we explain why we want to get involved, and how you can show your support! Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness amongst the general […]