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

ROCKVILLE, Md. (Sept. 16, 2024) – As part of its ongoing groundbreaking work to advance understanding and patient care of undiagnosed or misdiagnosed causes of kidney disease, the American Kidney Fund (AKF) will convene nearly 100 medical and industry leaders together with patient advocates on Tuesday for the fifth annual national summit of its Unknown Causes of Kidney Disease (UCKD) Project in Washington, DC. 

Launched by AKF in November 2020, the UCKD Project works to expand access to genetic testing, reduce systemic inequities, engage providers and empower patients. Implementation groups have concentrated their work in three areas: public policy, patients and caregivers, and health care professionals. 

"About 1 in 7 American adults has kidney disease, and we estimate that up to 15% don't know the cause of their kidney disease," said LaVarne A. Burton, AKF President and CEO. "That's a significant number of people living without concrete answers about why they were diagnosed with a life-altering chronic disease, and whose kidney disease journeys may include multiple treatment plans until they get the right diagnosis. The work of the UCKD Project is playing a vital role in improving health outcomes for all those affected by rare or undiagnosed kidney disease. This progress wouldn't be possible without the patient advocates, heath care providers, researchers and industry leaders who have worked with us on this initiative." 

A survey administered by AKF in 2022 showed health care providers find diagnosing and treating kidney disease more challenging when it is not associated with common causes of Type 2 diabetes and hypertension, reinforcing opportunities to expand professional education in areas such as rare kidney diseases and genetic testing. 

To that end, following AKF's highly successful online continuing medical education courses, this year's UCKD Summit will focus in part on educational efforts targeting community physicians, particularly those at small practices and those who serve suburban and rural areas. Earlier this year, AKF announced the expansion of its Know Your Kidneys™ program, which has three learning pathways including Know Your Cause, which offers information about testing options, finding a genetic counselor and an interactive tool to guide patients on talking to their doctor about identifying the cause of their kidney disease. 

The keynote speaker at the summit is Meredith A. Schanda, chief operating officer of the MAVEN Project. Schanda will discuss how the MAVEN Project is using telehealth to improve patient outcomes and access to care for vulnerable populations. 

Speakers at the summit also include Kevin Schnurr, managing director of the Alport Syndrome Foundation; AKF Ambassadors Nichole Jefferson and Emani McConnell-Brent; Jill Goodrich, co-executive director of the Dent Disease Foundation; Gillian Hooker, chief scientific officer at Concert; and Dr. Ali Poyan Mehr, founding president of the GlomCon Foundation.

Many participants of the UCKD Summit this year are members of AKF's recently established Rare Kidney Disease Action Network. They will also participate in AKF's Rare Kidney Disease Advocacy Day on Capitol Hill on Sept. 18, during which they will ask their members of Congress to support the Access to Genetic Counselors Services Act (H.R. 3876/S. 2323) and the New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790). 

AKF is grateful to its corporate sponsors whose support makes the UCKD Summit possible: Title Sponsors Novartis Pharmaceuticals Corporation and Travere Therapeutics; Leadership Sponsors Otsuka America Pharmaceutical, Inc. and Vertex Pharmaceuticals Inc.; Champion Sponsors Alexion, AstraZeneca Rare Disease; Boehringer Ingelheim; Natera; Novo Nordisk and Sanofi.