American Kidney Fund Hosts Fourth National Summit on Unknown Causes of Kidney Disease

ROCKVILLE, Md. (Dec. 5, 2023) — Today, the American Kidney Fund (AKF) will convene more than 100 medical leaders, patient advocates and academic and industry leaders for the fourth national summit of its Unknown Causes of Kidney Disease (UCKD) Project, which seeks to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes. This will be the first in-person summit after three years of virtual summits due to the pandemic. 

The UCKD Project, an initiative launched by AKF in November 2020, has been working across three areas that are critical to improving diagnosis and treatment of kidney disease: finding public policy solutions, such as improving access to genetic counseling and testing for people with kidney disease; expanding provider education; and educating patients about kidney disease testing. This week's summit, which will be held in Arlington, Virginia, will further explore how the kidney community can drive innovation in research, diagnosis and treatment of the underlying causes of kidney disease. 

"Before AKF launched this initiative, we learned through the patients that we serve that many of them did not know the cause of their kidney disease — and neither did their health care providers. Over the last several years, we have worked with key stakeholders to bring much-needed attention to this problem and find solutions," said LaVarne A. Burton, AKF President and CEO. "Finding out the root cause of one's kidney disease can bring crucial clinical insights to providers and have life-saving implications for individuals. We are excited to bring together leaders in the field along with patient advocates whose voices have been central to advancing the UCKD Project for our first in-person summit."

Speakers at the summit include Dr. Aliza Thompson, the deputy director of the Division of Cardiology and Nephrology at the Center for Drug Evaluation and Research at the U.S. Food and Drug Administration, who will discuss clinical trials and the importance of a definitive diagnosis. Also scheduled to speak are Dr. Krysztof Kiryluk, associate professor and physician-scientist in the Division of Nephrology at the Department of Medicine at Columbia University, whose research aims to define genetic factors contributing to the risk of kidney disease; Dr. Nicole Rochester, a pediatrician, CEO of Your GPS Doc, LLC and health care navigation expert; and David Rush, an advocate who lives with focal segmental glomerulosclerosis and CEO of WinsOnly Lifestyle LLC, who will moderate a panel discussion featuring Theresa Caldron, Katie Hallum and Jack Johnson, who have rare kidney diseases. 

In a survey released by AKF in 2022 that examined barriers and opportunities among health care providers to provide patients with a timely kidney disease diagnosis, health care providers said they estimated that 15% of their patients have kidney disease without an identifiable cause. The survey also showed that primary care teams are significantly less aware of several kidney conditions than are nephrologists, with rare kidney diseases having the greatest discrepancies in awareness levels. 

AKF has held the UCKD Summit virtually over the past few years due to the COVID-19 pandemic. In September, members of AKF's UCKD Coalition met with lawmakers on Capitol Hill to urge them to support legislation that will improve the diagnosis of rare kidney diseases. 

AKF is grateful to its corporate sponsors whose support makes this summit and the UCKD Project possible: Title Sponsors Novartis and Travere Therapeutics; Leadership Sponsors Otsuka America Pharmaceutical, Inc. and Vertex Pharmaceuticals Inc., and Champion Sponsors Alexion, AstraZeneca Rare Disease, Amgen, Natera and Sanofi.