AKF's Unknown Causes of Kidney Disease Project: Key milestones and the path ahead

Everyone's kidney disease story should answer a crucial question: what caused it? Yet for thousands of people living with kidney disease, that question remains unanswered. Understanding the cause of someone's kidney disease doesn't just provide the "why" of their disease; it provides their healthcare team with critical information to help tailor their treatment. Knowing the precise cause of kidney disease can shape treatment decisions, influence outcomes and inform decisions around kidney transplant. 

To tackle this problem, AKF launched the Unknown Causes of Kidney Disease (UCKD) Project® in January 2020. AKF's own data had shown that up to 14% of people with kidney failure who received charitable assistance from AKF did not know the cause of their kidney disease. With new innovations on the horizon, and with support from industry partners committed to advancing understanding of unknown, rare and genetic kidney diseases, AKF set forth on an ambitious initiative. Together with patient advocates, clinicians, researchers, industry leaders and other experts, AKF developed a UCKD roadmap that has served as a foundational guide for these ambitious efforts. 

Now seven years into the initiative, here's a look at some of what the UCKD Project has accomplished, and where it's going next.   

Collaborating to drive progress 

A steering committee of scientists and people impacted by unknown or rare kidney diseases helped plan the first UCKD Summit in 2020 and bring a wide range of people and organizations together for a virtual event. Three workgroups arose out of the summit, focusing on public policy, healthcare professional education and patient and caregiver education. From the public policy workgroup, AKF formed the UCKD Coalition, which works to educate and inform policymakers about rare kidney diseases and recommend strategies to address it and understand the causes. Members of the coalition have gone to Capitol Hill to urge support for rare kidney disease-related legislation, including the New Era for Preventing End-Stage Kidney Disease Act.  

Purposeful discussions on innovation, research and access, coupled with inspiring stories from patient advocates, have remained a hallmark of AKF's UCKD Summit. Since 2022, this event has convened scientists, advocates and government, academic and industry leaders to Washington, D.C., to devise actionable ways to drive innovation in research, diagnosis and treatment of kidney diseases.  

"Far too many people living with chronic kidney disease don't know the cause of their condition," said Jula Inrig, MD, head of research and development and chief medical officer at Travere Therapeutics. "Without a more precise diagnosis, patients may miss opportunities to benefit from advances in kidney care and, in some cases, may not learn they have a rare kidney disease until significant damage has already occurred. The American Kidney Fund's Unknown Causes of Kidney Disease Project is helping people achieve accurate diagnoses which is a critical step toward more personalized care." 

Recent summits have focused on educational efforts targeting community physicians, particularly those at small practices and working in suburban and rural areas.  

Through AKF's partnership with the MAVEN Project, AKF is increasing its reach to community, primary care and rural physicians, providing educational resources and materials for the MAVEN Project's network of community health centers and safety net clinics.  

Informed by data 

In 2022, as part of the UCKD Project, AKF released findings from its survey of healthcare professionals (HCPs).  The results showed that primary care teams are significantly less aware of several kidney conditions than nephrologists are, particularly rare kidney conditions.  This reinforces the need to expand CKD testing and increase awareness of rare kidney diseases.  

In 2025, AKF once again surveyed healthcare professionals to learn more about knowledge and practices related to rare, genetic and unknown causes of kidney disease. Between 2022 and 2025, HCPs became more involved in diagnosing cases of CKD, especially nurse practitioners and physician assistants. However, delays in referrals to nephrologists and barriers to pursuing genetic testing remain, including upwards for four months to get a first visit into a kidney specialist. The 2025 survey also indicated that familiarity with genetic testing increased, particularly among nephrologists, but overall usage of genetic testing remains limited. Increasing education on genetic testing could improve the accuracy of diagnoses for unknown causes of kidney disease and support earlier, more targeted evaluation and monitoring.  

Educational courses, resources and outreach 

In 2023, AKF launched free, accredited, online continuing medical education (CME) courses for clinicians and allied health professionals. The courses address critical topics related to CKD and rare kidney diseases and are designed for professionals who play a leading role in kidney disease prevention, early detection, patient education and coordinating care for kidney patients.  

As part of outreach efforts, AKF has also convened sessions or exhibited at events such as the Renal Physicians Association conference, the National Society of Genetic Counselors conference and more.  

A critical part of AKF's UCKD Project work also involves creating additional resources for people living with kidney disease and their caregivers. In 2024, AKF launched its expanded Know Your Kidneys® program to provide people at risk for kidney disease and those living with kidney disease with comprehensive, interactive resources to support them through the entire kidney disease journey — from prevention to post-transplant living. Know Your Cause®, part of this program, offers disease-specific content on possible causes of a person's kidney disease, which can include a rare or genetic disease. Know Your Cause has information about: 

Title Sponsors Novartis Pharmaceuticals Corporation and Travere Therapeutics, Inc.; Leadership Sponsors Boehringer Ingelheim, Otsuka America Pharmaceutical, Inc., and Vertex Pharmaceuticals Inc.; Champion Sponsors Alexion Pharmaceuticals, Inc., Alnylam, Natera and Sanofi.  

Learn more about the UCKD Project.