Press release

Unknown Causes of Kidney Disease Project: American Kidney Fund Convenes Working Groups to Advance Kidney Disease Diagnoses

ROCKVILLE, Md. (December 7, 2021)  — The American Kidney Fund (AKF) yesterday held a working session summit to advance the path forward toward uncovering the unknown causes of kidney disease. The working session was the latest convening of AKF's Unknown Causes of Kidney Disease (UCKD) Project, which brings together thought leaders from across the renal community to address four areas that are critical to improving diagnosis and treatment of kidney disease.

"Too many patients fall into late-stage kidney disease or kidney failure, without a clear understanding of why. This can have dire consequences, such as delayed treatment, additional comorbidities and even the loss of a transplanted kidney," said LaVarne A. Burton, AKF President and CEO. "We are working to bring together a thoughtful, dedicated collaboration among the kidney care community, resulting in steady progress toward making systematic changes that will help reduce the number of patients unaware of the origins of their kidney disease."

During the summit, the UCKD Project's three implementation groups discussed key goals, current progress, anticipated barriers and next steps on:

1. Public policy: Ensuring equitable insurance coverage for patients seeking an accurate diagnosis, including policies that increase genetic testing coverage for kidney disease.

2. Patient and caregiver empowerment: Creating a suite of resources and tools to empower patients to work effectively with their clinicians to secure an accurate diagnosis.

3. Health care professional awareness and education: Addressing knowledge gaps among clinicians, beginning with conducting research with primary care physicians, nephrologists, urologists, endocrinologists, nurse practitioners and physician assistants.

"Sanofi Genzyme has a long-standing commitment to improving the lives of people living with rare renal diseases, said Duane Clark, General Manager, US Rare Diseases, Sanofi Genzyme. "As part of that effort, we are proud to be an ongoing supporter of the important work of the American Kidney Fund and the Unknown Causes of Kidney Disease project, including sponsorship of the Dec. 6 Summit. We know that many people enter late-stage kidney failure without knowing the cause of their disease. The UCKD Summit offers a unique opportunity to bring a wide variety of stakeholders to the table to tackle the real problems in diagnosis and develop action plans, with the common hope of bringing solutions forward that benefit patients living with chronic kidney disease."

The UCKD Project is supported by Title Sponsor Sanofi Genzyme, Leadership Sponsors Natera and Vertex Pharmaceuticals, Inc. and Champion Sponsors Alexion Pharmaceuticals, Otsuka America Pharmaceutical, Inc. and Travere Therapeutics.

Participants in yesterday's summit included Alexion Pharmaceuticals, Alport Syndrome Foundation, Fabry Support and Information Group, Natera, National Minority Quality Forum, National Organization for Rare Disorders, National Society of Genetic Counselors, NephCure Kidney International, Otsuka America Pharmaceutical, Inc., Renal Physicians Association, Sanofi Genzyme, Travere Therapeutics and Vertex Pharmaceuticals, Inc.

About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million 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. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.

For more information, please visit, or connect with us on Facebook, Twitter, Instagram and LinkedIn.