Press release

New American Kidney Fund Initiative Aims to Improve Diagnosis of Underlying Causes of Kidney Disease and Kidney Failure

Spring summit will bring together scientists, patients and other stakeholders to drive innovation in diagnosis, research and treatment

ROCKVILLE, Md. (January 21, 2020) — The American Kidney Fund (AKF) today announced it will convene a summit of scientists, patients and other stakeholders in spring 2020 aimed at advancing the science of diagnosing the underlying causes of kidney disease and kidney failure. For the 37 million Americans living with kidney disease — and the 10,000 diagnosed with kidney failure each month — a precise diagnosis of the underlying cause could yield significant improvements in treatment and outcomes.

A 2019 study found that in roughly 10% of new cases of chronic kidney disease, the cause is listed as unknown. The ramifications of undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes, as well as research and development for new treatments. Earlier diagnosis of kidney disease (which often has no symptoms until the late stages) and a precise understanding of the cause could yield an opportunity to slow the disease's progression to kidney failure.

While diabetes and high blood pressure cause most cases of kidney disease and kidney failure, many other conditions, including genetic disorders and rare diseases, can affect the kidneys as well. Undiagnosed kidney-related rare diseases and genetic disorders can have health implications for patients and their family members and could impact the longevity of a patient's kidney transplant.

AKF's summit will bring together scientists, patients, and academic and industry researchers to look for ways to drive innovation in research, diagnosis and treatment of kidney diseases. Initial leadership funding for this initiative is provided by Sanofi Genzyme. Other partners are expected to join the effort in 2020.

"Kidney disease has become more of a national priority than ever before with the federal government's Advancing American Kidney Health initiative, which is helping to spur innovation in research and treatment for this disease that affects so many Americans," said LaVarne A. Burton, president and CEO of the American Kidney Fund. "This new AKF initiative will help to assess and address the gap in patient care that occurs when the underlying cause of kidney disease is not identified."

AKF will establish a steering committee of scientists and patients with experience in this area to help plan the summit and bring together a broad coalition working group to participate in the spring summit. Summit participants will review the research on this subject, discuss available or potential data sets, identify any barriers to progress, and develop a strategic plan for a path forward to address this serious issue in nephrology.

"In addition to benefiting from industry experts, the patient voice will be central to this project, which is an opportunity to foster greater collaboration across disciplines in nephrology research with the ultimate goal of improving patient outcomes," Burton said. "We are grateful to Sanofi Genzyme for signing on as a lead sponsor for this initiative and look forward to welcoming a coalition of additional partners to support this important work."

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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