AS ABBY WAITS

I came across this article this morning and wanted to hug this young lady and tell her that everything would be alright.  The fact is there isn’t anything that anyone can promise her.  She continues to wait for her diagnosis while she is suffering daily with her unbearable symptoms.  Read her story:  https://globalgenes.org/raredaily/teens-pain-and-unexpected-swelling-stumps-doctors/

Patient Can Be A Loaded Word

This is a must read!

AS I LIVE & BREATHE

The announcement of this year’s theme for NORD‘s (National Organization for Rare Disorders) Rare Disease Day 2016 gave me something to mull over this morning. I’m going to play the devil’s advocate here for just a moment over this year’s choice of theme & slogan.

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