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Living

A total of 87 posts are filed under Living
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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
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CBS Sunday Morning: Putting a Face on Rare Diseases
CBS (Source)—When children are dying of rare diseases that few people are working to cure, a closer look is required — which is just… Continue Reading
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Behind the Mystery Set to Air Segment on Amyloidosis this September
It’s called the “great masquerader.”  Behind the Mystery Rare & Genetic is talking about AL amyloidosis – a rare, progressive and… Continue Reading
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Real Madrid Star James Rodriguez Visits Progeria Patient at Home
Manchester United transfer target James Rodriguez made a teenage girl’s dream come true by taking a trip to visit her at home. The Real… Continue Reading