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Patient Stories

A total of 227 posts are filed under Patient Stories
Girl with Parkes Weber Syndrome Deliver Message on Body Acceptance
 A Canadian teen with a rare disease that causes one leg to permanently swell to double its size has captured the Internet’s attention… Continue Reading
3-Year-Old Citrullinemia Patient Gains Support From Leukemia Survivor, Local Band
Three-year-old Raylea Morgan tries to keep up with her baby brother. The toddler suffers from a rare genetic disorder in the liver… Continue Reading
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This Patient Never Dreamed Her Stomach Pain Would Lead to Complex Diagnosis
Nina Perez knew something was wrong when her symptoms started to progress. She never dreamed that her diagnosis would be  Budd-Chiari… Continue Reading
Calgary Nurse, Doctor Save Boy with Rare Takayasu Arteritis
For a child with a rare blood disease, Ben Anderson is lucky. The four-year-old’s condition could have gone undetected until it caused… Continue Reading
Ethan with Bartter Syndrome Sworn in as an Honorary Air Force Second Lieutenant
Ethan Hoffman, 12, joins 910th Airlift Wing By William K. Alcorn, Ethan Hoffman, 12, of Howland, became the 910th Airlift… Continue Reading
Milton Man with Rare Disease Finds Inspiration in Art
CHECKORPHAN REPORTS The Cystinosis Research Network (CRN), a Chicago-based 501(c)(3) charitable organization, is hosting its family… Continue Reading
PEOPLE: Teen with Epidermolysis Bullosa Gets to Attend Prom in Fairytale Evening
Cinderella once said that a dream is a wish your heart makes, and for a Columbus, Ohio, high school senior battling a rare skin disease, her… Continue Reading