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Rare Community

A total of 477 posts are filed under Rare Community
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
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
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
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