Oftentimes, chronic kidney disease (CKD) develops secondary to other conditions such as diabetes or hypertension. Understanding the cause of a person’s CKD is vital for healthcare providers to ensure proper treatment. 

Unfortunately, some patients’ CKD arises from unknown causes, and may not receive early diagnosis and treatment. To help find answers and provide support, the American Kidney Fund (AKF) announced the formation of the Unknown Causes of Kidney Disease (UCKD) Coalition. Learn what it is and what it hopes to accomplish.* 

Why is it needed?

According to LaVarne Burton, president, and CEO of the AKF, there are too many patients developing late-stage CKD or kidney failure without a clear understanding of why. “This can have dire consequences,” she says, “such as delayed treatment, additional comorbidities, and even the loss of a transplanted kidney.”

With the development of the UCKD Coalition, gaps in our healthcare system may be filled. “We are working to bring together a thoughtful, dedicated collaboration among the kidney care community,” Burton adds, “resulting in steady progress toward making systematic changes that will help reduce the number of patients unaware of the origins of their kidney disease.”

What are the coalition’s plans?

The coalition consists of 15 well-established organizations and individuals including, among others, Otsuka America Pharmaceutical Inc., Sanofi, AstraZeneca Rare Disease, Alport Syndrome Foundation, Emory School of Medicine, and the National Organization for Rare Disorders (NORD).

This group will bring public attention to the state of rare kidney diseases through writing to Congress and other advocacy efforts, as well as recommend strategies to address the issues. 

“Everyone with kidney disease should receive an early diagnosis in order to give them the opportunity to treat the disease and delay or prevent kidney failure,” says Burton. “The UCKD Coalition is united in its commitment to advance policies and legislation that will help people with kidney disease, in particular rare kidney diseases, get the answers and support that they need.” 

*AKF announces formation of the Unknown Causes of Kidney Disease Coalition. (2022, September 30). Retrieved October 15, 2022, from https://www.healio.com/news/nephrology/20220930/akf-announces-formation-of-the-unknown-causes-of-kidney-disease-coalition