HALT GENETIC KIDNEY DISEASE IN ITS TRACKS​

Did you know that up to 10% of all chronic kidney disease (CKD) patients in the U.S. – as many as 3.5 million people – have a genetic mutation that causes their disease? This staggering number includes an estimated 40% of dialysis patients who, along with their nephrologists, are in the dark about the cause of their kidney failure.

Fortunately, the genetic causes of many kidney diseases have been identified. One type of inherited kidney disease is Autosomal Dominant Tubulointerstitial Kidney Diseases (ADTKD), the most common of which are ADTKD-MUC1 (“MUC1”) and ADTKD-UMOD (“UMOD”). (Click on links for more information about MUC1 and UMOD.)

Genetic testing for MUC1 and UMOD is simple, and it is critical for identifying and HALTING these kidney diseases.

A breakthrough therapy is on the horizon

There is much HOPE around promising drug-like compounds that may HALT the devastating impacts of MUC1 and UMOD. 

Listen to Dr. Anna Greka from Harvard Medical School and The Broad Institute of MIT and Harvard describe this scientific breakthrough in her 13-minute TED Talk from April 2023, and learn more about her research here.

RKDF is working closely with The Broad Institute, its affiliate NewCo, and the Rare Inherited Kidney Disease Research Team at Wake Forest University School of Medicine to prepare for a clinical trial of these compounds.

Patient Stories

Some experienced kidney failure in their 20s… others in their 70s. All of them experienced a gradual decline in kidney functioning over many years, just like one or more family members before them.

Learn how these families discovered that their family history of chronic kidney disease was the result of MUC1 or UMOD and how they are faring.

Join us in our mission to raise awareness about ADTKD and encourage genetic testing in an effort to help pave the way for new treatments and bring HOPE to potentially over 1 million people worldwide.

We Need Your Help!

Every patient who tests positive for UMOD or MUC1 helps researchers learn more about this insidious disease and work towards a cure.

Learn more about RKDF’s efforts to spread the word about ADTKD, encourage genetic testing for MUC1 and UMOD, and build a supportive community of patients, families, and the medical professionals who treat them. 

EVENTS

Upcoming Events:

7th Annual Global Summit on Kidney Disease Innovations
American Association of Kidney Patients (AAKP) in collaboration
with George Washington University School of Medicine and Health Sciences    

RKDF’s Executive Director Sharon McGroder will share her family’s struggle with ADTKD and discuss
the importance of early diagnosis of rare genetic conditions for helping to find a treatment.

Thursday & Friday, May 22-23, 2025
Times TBD

James (“Uncle Jim”) Myers Kidney Stories Program 
in a live Streamyard Broadcast
RKDF’s Executive Director Sharon McGroder will discuss ADTKD, her personal story, and RKDF’s mission!

Friday, May 30, 2025
8:00 PM - 9:00 PM EDT

Past Events:

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