They know that they have lost their son. What they don’t know is why.
One of the most moving moments (and there were many of them) at Global Genes’ recent patient advocacy summit was when Heather Long, founder of the Texas-based nonprofit U. R. Our Hope, rose to tell the audience why she felt that diagnosis was such a critical issue for the rare disease community. Long and her husband, Cody, have three children; two daughters and a son who passed away in 2006 at the age of 5. They know that they have lost their son. What they don’t know is why. Doctors told the Longs that Cal probably had a very rare metabolic disease, but they were unable to diagnose it. Read More