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Patient Stories

A total of 110 posts are filed under Patient Stories
Daughter’s Mysterious Symptoms Lead to Fibrodysplasia Ossificans Progressiva Diagnosis
I have a wonderful daughter. She’s smart as a whip, funny and full of life. She also has a rare genetic disorder which makes it impossible… Continue Reading
Friedreich’s Ataxia Survivor Starts Support Organization in India
Submitted by Chandu Prasad George. I faced many similar health problems as my sister did.  In my childhood, I couldn’t run, walk or… Continue Reading
The Journey of Super Ryder with Multiple Rare Diseases
Our little warrior Ryder came into this world fighting from the beginning arriving early at 35 weeks. After respiratory distress, jaundice,… Continue Reading
Jump for Jude! (Out of a Plane, That Is!)
What would you do for a family in need? Jump out of a plane? That’s what two supporters of one young boy are willing to do if it means… Continue Reading
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Eleven-year-old Ben Lou’s Brilliance Overshadows his Rare Disease
At age 11, Ben Lou is among youngest members of the U.S. math team that will compete for an international title in Beijing later this month.… Continue Reading
Hope for Brian: A Mother’s Journey Towards Her Son’s Diagnosis of A-T
On December 29, 2010, our beautiful baby boy Brian came into this world and I was instantly in love. For the next year, everything was… Continue Reading
One in 300 Million: Snyder Robinson Syndrome
Our youngest son has an ultra-rare disease. He is one in approximately 300 million. However, it wasn’t until five and a half years into… Continue Reading

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