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Patient Stories

A total of 545 posts are filed under Patient Stories
Video: What Should I Say?
What should you say when you see someone with disabilities? Bo Bigelow says that it’s like how you should treat someone who’s pregnant.… Continue Reading
A Christmas Story
  Caroline Harding decided to throw a Christmas party. She wanted to do it for the many young people, who like her son Columbus, had a rare… Continue Reading
NPR: A Couple’s Quest To Stop A Rare Disease Before It Takes One Of Them
by Rae Ellen Bichell In 2010, Sonia Vallabh watched her mom, Kamni Vallabh, die in a really horrible way. First, her mom’s memory… Continue Reading
Perth Family Confronts Metachromatic Leukodystrophy Diagnosis in Newborn
by Liam Croy A Perth family devastated by a rare genetic disorder has been thrown a lifeline by a world-leading research program in Italy.… Continue Reading
Tunnel Vision, Headaches Lead to Rare Diagnosis of Paroxysmal Nocturnal Hemoglobinuria
by Skyler Hrabe I will never forget the feeling of utter helplessness, despair and disbelief as the realization dawned on me that my… Continue Reading
First Duchenne Muscular Dystrophy Boy in Canada to Begin Drisapersen Redosing
Five years ago, 12-year-old Alex Chiabai was one of the first boy in Canada to begin taking drisapersen, a promising drug that provided a… Continue Reading
Australian Man Experiences Rare Instance of Guillain-Barré Syndrome (GBS)
Thanks to for this piece. A Sydney man who was paralysed by a rare autoimmune disease while holidaying in New Zealand last… Continue Reading