Press release

American Kidney Fund Releases Roadmap for Addressing the Unknown Causes of Kidney Disease

Roadmap helps chart a path forward in improving kidney disease care and health outcomes

ROCKVILLE, Md. (July 27, 2021) — The American Kidney Fund (AKF) today announced the Roadmap for Addressing the Unknown Causes of Kidney Disease, a comprehensive guide that outlines how to improve diagnosis of the root causes of kidney disease. The Roadmap summarizes the barriers to identifying the causes of kidney disease; the challenges that not having a clear diagnosis cause in patients' lives; and the potential solutions that can improve diagnoses, ultimately improving care and slowing the progression of kidney disease.

Identifying the root cause of patients' kidney disease is often important for making treatment decisions, but studies suggest the cause of kidney failure is unknown for between 5% and 20% of patients. To address this challenge, AKF developed the Roadmap, identifying four areas that are critical to improving diagnosis and treatment of kidney disease:

1. Improving access to genetic testing for people with kidney disease to increase the number of clear diagnoses;

2. Developing national standards related to genetic testing through a consensus-driven process leveraging best practices;

3. Expanding provider education and realigning financial incentives to prioritize definitive diagnosis of the cause of kidney disease; and

4. Educating patients about kidney disease and testing in an effective, culturally competent manner.

"Each step along the kidney care journey can be overwhelming and complicated, particularly for people who know they have kidney disease, but do not know why. Discovering the root cause of a patient's kidney disease can provide clinical insights for the provider and have life-saving implications for the individual," said LaVarne A. Burton, AKF President and CEO. "We're eager to continue leading the kidney community in reducing the number of patients unaware of the origins of their kidney disease."

The Unknown Causes of Kidney Disease Project is supported by Leadership Sponsors Natera, Otsuka America Pharmaceutical, Inc., Sanofi Genzyme and Vertex, and Champion Sponsors Alexion and Travere.

The Roadmap builds off the growing body of research that suggests a sizable portion of undiagnosed causes of kidney disease could be identified through genetic testing and screening. The research highlights the importance of increasing access and coverage for genetic testing and diagnostic tools, like biopsies and imaging, while also ensuring that national standards are established.

To implement the Roadmap's recommended strategies, AKF will work with providers and other stakeholders to develop accessible resources for providers, patients and caregivers to pursue a diagnosis for the root causes of kidney disease or failure and to have clear conversations about genetic testing. These comprehensive and inclusive resources will help patients with their kidney care journey, while also empowering them to seek critical answers when they are confronted with kidney disease or failure with an unknown cause.

"Currently there is a lack of standards, best practices and uniform data collection for genetic testing for kidney disease of unknown cause," said Dr. Ali Gharavi, AKF Unknown Causes of Kidney Disease Project steering committee member. "It is our hope that by following this Roadmap, we can start initiatives that can improve quality of care for patients regardless of where they may reside or seek treatment."

The Roadmap was developed based on expert insights that were discussed during AKF's Unknown Causes of Kidney Disease Summit in December 2020. By following the Roadmap, AKF and the broader kidney community can promote systemic change in the diagnosis and treatment of kidney disease. The Roadmap can be viewed at

About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nonprofit with the greatest direct impact on people with kidney disease. AKF works on behalf of 1 in 7 Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. AKF fights for kidney health for all through programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy. AKF is one of the nation’s top-rated nonprofits, investing 97 cents of every donated dollar in programs, and holds the highest 4-Star rating from Charity Navigator for 21 consecutive years and the Platinum Seal of Transparency from Candid, formerly known as GuideStar. 

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