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Patient Stories

A total of 428 posts are filed under Patient Stories
Science Magazine: Rare Diseases and Rare Opportunities
On 24 October 2014, after a daylong meeting to plan a rare disease clinical trial, Raymond Wang hopped into a cab and pulled out his… Continue Reading
Nebraska Boy with Headache Diagnosed with Rare Disease
What his mother first thought was a harmless headache landed 7-year-old Somolon Pyle in the hospital, where he fell into a coma and was… Continue Reading
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No Diagnosis: Not Good Enough for One Mother
Emma Rose arrived August 26, 2008, very much aware of her surroundings and curious about the new world she had just entered. She suffered… Continue Reading
Enduring 13 Surgeries for Cranio Frontal Nasal Dysplasia
by Dianne Woehnker About a month after I was born, my mom took me to the doctor for a wellness visit. At this appointment, she mentioned… Continue Reading
Lawyer Suffers Condition Which Caused Shoe Size to Halve Making Her Stumble and ‘Appear Drunk’
Courtesy of The Mirror A lawyer has told how her shoe size has halved due to a rare genetic disorder. Sarah-Lyn Mumberson, 27, has… Continue Reading
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PURA Syndrome Causes Respiratory Distress in Infant
On the 22nd of September, 2013 our second child was born at two AM. He is a boy, Joshua. I hold him in my arms and a few seconds later he is… Continue Reading
Rare Disease Disorients Young Man, Police Called In to Tackle and Taser
By Luke Boulianne It began on January 11th, 2014 shortly after returning from a ski trip in Quebec, when I immediately began feeling ill,… Continue Reading