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A total of 87 posts are filed under Living
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
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
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
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