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Patient Stories

A total of 200 posts are filed under Patient Stories
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CheckOrphan: Palo Alto Toddler Diagnosed with ‘White Matter Disease’
Source Up until a few months ago, little Kash Filiac was crawling, trying to stand and playing with his toys. Now, at 19 months old, he can… Continue Reading
Moving a Medically Fragile Child: Severe Congenital Neutropenia
Let me talk about my son John J Merchlinsky IV. John is not your typical five year old. For one, most kids with his disease only have a life… Continue Reading
Student Spreads Awareness of Epidermolysis Bullosa Through School Project
She has definitely been talking about it and soon, she’ll be walking it. When Iliana Azevedo and her fellow Dozier-Libbey Medical High… Continue Reading
Winners of Global Gene’s First Annual RARE Patient Story Awards
Today Global Genes announces the winners of its first annual RARE Patient Story Awards. Out of ten fantastic candidates, three were voted on… Continue Reading
Tia’s Diagnosis: Toll Receptor 9 Deficiency
Tia was born a healthy child via C-section at 39 weeks. Everything seemed fine until she was almost 3 months old. We brought her to the… Continue Reading
Iowa Public TV Host Fights Multiple System Atrophy
Dan Miller wears his heart on his hat. He shuffled into a twice-weekly physical therapy session, cracking a smile when someone teased him… Continue Reading
Sudden Seizure Spurs CDKL5 Diagnosis for Kaleah
Kaleah is a very happy and active two-year-old little girl. I can see it in her eyes that she longs to be normal, to participate in the… Continue Reading