Just as I was starting the Capstone Project for my MA in Global Leadership, my 6-year-old daughter, Lexi, lost her life to a rare disease called Blau syndrome. 400 million people worldwide are living with a rare disease diagnosis, which is more than AIDS and cancer combined. 200 million are children and 30% will not live to see their fifth birthday (Global Genes, 2015). The term “rare” is a misnomer.
