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!

Sick But Social: PICC Lines and Ports
By Stacey Philpot Like many, the early stages of my diagnoses were often fraught with a rapid, fluid exchange of emotions and thought… Continue Reading
Not Quite Empty Nest: Grief and the Special Needs Parent
By Kate Welch When my son Caleb was born in 1996, he was taken from me by ambulance before he was  12 hours old to have open-heart surgery… Continue Reading
Screen Shot 2016-09-09 at 11.38.02 AM
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
Screen Shot 2016-09-07 at 10.33.40 AM
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

Follow us on Twitter