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Living

A total of 90 posts are filed under Living
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
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
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
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
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
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
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
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