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, 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 […]
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 […]