This August, it’s time to spread the word about a rare disease that may not be that rare after all. It’s called autoinflammatory disease and is actually a category of…
Having a chronic condition can be a scary thing, especially for a child. For a parent, hearing such a diagnosis can be devastating. Words like childhood cancer, protein C deficiency,…
Batten disease is one of the rarest diseases in the world. In fact, it only affects about two to four out of every 100,000 births in the United States, which…
If you've ever been curious about muscular dystrophy, now is the time to learn because August is Muscular Dystrophy Awareness Month! Chances are, even if you think you have no…
BIG NEWS in the ALS community this week. As reported by NewsWise, researchers at the Mayo Clinic and St. Judes Children's Research Hospital have discovered the dysfunctional cellular mechanism behind…
I attended the 2017 CRN Family Conference in Utah this July. As someone living with rare disease who is older, (I am in my early 30’s with a disease which…
According to some Finnish researchers, children with heterozygous familia hypercholesterolemia (HeFH) should use statins as a treatment with caution. Though they have proven to be able to lower lipid levels…
My 4-year-old son went through a phase a few years ago where he had to clarify everything he said. “Momma, that car was blue. It wasn’t green. It was blue.”…
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