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
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
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
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
“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
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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