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BCBST – Let’s Talk
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Blue Cross Blue Shield of TN Wants My Son to Die
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What Charlie Gard’s battle says to rare disease parents
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When You Outlive Your Generation
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Letter No. 14: Dear Mothers
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A Rare Disease Parent’s Top 10 Christmas Wish List
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Therapy Thursday: 50% off Calmer – a book to help with your child’s medical trauma
If your child has a chronic medical condition, then you’ve probably encountered challenges with medical trauma. Or maybe someone else in your life faces this challenge. From minor flinching at needle sticks all the way to full blown meltdowns, you probably know how challenging it is to go from appointment to appointment, test to test,…
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Why I Freak Out When My Son Says He’s Going to College
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I have a confession
I have a confession. I’ve been advocating and writing about rare disease which makes total sense since Case’s condition is, in fact, what they call ultra rare. But lately, I feel like I’ve been hiding something. Not on purpose, it seemed like it was a temporary thing at first, it was really just nobody’s business…
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Why? Why my child?
