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Rare Community

A total of 477 posts are filed under Rare Community
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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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GRIDS2016 Symposium: Neurological Spectrum in Gaucher Disease
Organization: Lysosomal Disorders Unit Submitted by: Ozlem Goker-Alpan Time for our Gaucher Disease Type 2/3 families to get together! Dr.… Continue Reading
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Pitt Hopkins Awareness Day Coming September 18th
Organization: Pitt Hopkins Research Foundation Submitted by: Jessica Fletcher Sunday, September 18th marks our 4th annual International Pitt… Continue Reading
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Join in for RDLA’s September Legislative Webinar & In-Person Meeting, Sept. 14th
Wednesday, September 14th: 3:00 pm to 4:00 pm EST  1101 14th St. NW Suite 700 Washington, DC 20005-5601 Agenda: H.R. 3742 – The Access… 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