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Uncovering the Genetic Link in My Family by Lisa Parcell
Our family’s chronic kidney disease dates back to the late 1800’s—at least six generations have been affected by it. Growing up, I watched both my grandmother and my mother go through dialysis and eve... ...more
Patient Stories
September 25, 2025•1 min read
Living Well With ADTKD, by Evan Leong
Ever since I can remember, kidney disease has been a normal topic in our family. My grandfather got his kidney transplant around the time I was born & my mother got hers over five years ago. It was al... ...more
Patient Stories
July 16, 2025•2 min read
My Experience with ADTKD-UMOD and as a Two-Time Kidney Transplant Recipient, by Kathy Stankus
My experience with my genetic kidney disease, Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD) - Uromodulin Kidney Disease (UMOD), began when my mother became ill in her sixties (I was in ... ...more
Patient Stories
May 28, 2025•4 min read
An Invisible Disease, by Autumn Carroll Steen
I have no recollection of the day or even the manner in which I was told I had the Carroll kidney disease, which is how I thought of it at the time. ...more
Patient Stories
January 31, 2025•6 min read
Sharon’s Patient Story
I am hopeful that the brilliant geneticists, biologists, and physician-researchers studying rare kidney diseases will find a treatment in my lifetime and HALT this disease from further ravaging my fam... ...more
Patient Stories
October 15, 2024•3 min read
Joe's Patient Story
The uncertainty and fear that come with this diagnosis are overwhelming, but we are determined to stay proactive, hopeful, and to help raise awareness. ...more
Patient Stories
September 17, 2024•3 min read
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