Guest Blogger

Are you interested in submitting your story or speaking out on an issue in the rare disease community? Don’t be shy! Click here to submit your patient story--and click here to write a guest blog!

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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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How Isolation Impacts Those Suffering With Rare Disease
by Daniella Koren, for MediaPost There’s little in life as jarring as being diagnosed with a serious disease like cancer or diabetes; the… Continue Reading
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Can Oxytocin Help Children with Rare Eating Disorder?
by James Radke, PhD Prader-Willi syndrome (PWS) is a genetic disease best characterized by individuals developing an insatiable appetite,… Continue Reading
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Life with Ehlers-Danlos: Handicap Tips for Stadium Seating
September means a lot of things. It’s the time when it’s officially acceptable to add pumpkin spice to everything. (Thank goodness!) In… 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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“My Best Advice as a Caregiver” by Annie Achee of the National Leiomyosarcoma Foundation
  I am not the patient, but the caregiver of my husband, Dr. Mitchell (“Mitch”) D. Achee, Radiologist, and Leiomyosarcoma (LMS)… Continue Reading
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Join the National Leioymyosarcoma Foundation on October 7-8th for Educational Symposium
Organization: National Leioymyosarcoma Foundation Join the National Leioymyosarcoma Foundation on October 7-8th, 2016 where the NLMSF will… Continue Reading
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