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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

Rare Kidney Disease Foundation Names Deputy Director

Lisa excels at translating RKDF’s mission into action, from re-establishing and leading the Ambassador Program, to taking on the role of Treasurer, to overseeing RKDF’s website upgrade,” reports Richa... ...more

Press Releases

August 22, 2025•2 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

Position Statement on Proposed Cuts at NIH

Like many of you, we at RKDF are deeply concerned about the proposed cuts to NIH. ...more

News

March 16, 2025•1 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

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