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Living

A total of 90 posts are filed under Living
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Home Depot Employees Create Innovative Walker for Boy with Norrie Disease
All of Jessica Johnson’s doubts about her recent move from Oregon to Texas washed away the minute a few kind Home Depot employees entered… Continue Reading
Writing a prescription for good health
The 5 Things Rare Patients Think Before Meeting a New Doctor
Ever wonder what goes through a a rare disease patient’s mind before they meet a new doctor? The worries? The fears? The hope? Here’s a… Continue Reading
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RARE Revolution Online Magazines Premieres Inaugural Issue
As a community, we are only as strong as our most prominent voices—and now those voices have another forum to be heard! The release of… Continue Reading
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Full Behind The Mystery Segment: The Trouble with Diagnosing a Rare Disease
Lifetime’s The Balancing Act premiered it’s newest segment of “Behind the Mystery” earlier this month with an educational story on… Continue Reading
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Rare Disease Report: 2016 NFL Kickoff: Players Who Are Rare Disease Advocates
by Andrew Black for RDR On September 8th, 2016 NFL regular season kicks off with a Super Bowl 50 rematch of the reigning world champions… Continue Reading
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Five Tips on Surviving an Extended Hospital Stay
You’ve been there. I’ve been there. Sometimes you find yourself being checked into the hospital just knowing it’s going to be a long,… Continue Reading
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Rally on Rainier: Father Climbs For His Son and All Children Impacted by Sanfilippo Syndrome
Carl Kapes (father to two sons impacted by Sanfilippo Syndrome or MPS IIIA) has organized a climb called Rally on Rainier for later this… Continue Reading