Kidney care professionals, clinicians, researchers, advocates, and patients outline practical steps to improve diagnosis, guide care, and connect families with answers

NEW YORK, Sept. 30, 2026 /PRNewswire/ — The National Kidney Foundation (NKF) convened nephrologists, genetic counselors, researchers, patients, advocates, and other clinicians in Dallas, TX for the Genetics in Kidney Health Summit held September 18-19^th. The summit’s goals included accelerating the responsible use of genetic testing in kidney care and aimed to strengthen collaboration across these groups, expand understanding of genetic testing guidelines and their clinical implications, and equip attendees with practical strategies for incorporating testing into patient care. Together, participants focused on turning rapidly advancing science into workable steps that can help more people receive an accurate diagnosis, understand what a result may mean for their family and access care or research opportunities tailored to their condition.

A central message from the summit was that genetic testing can no longer remain limited to a small number of specialty centers as community nephrologists care for many people who may benefit from testing and can serve as kidney genetics champions by identifying appropriate patients, explaining testing, interpreting results with expert support and coordinating follow-up care.

“Genetic testing is becoming an increasingly important part of kidney care because it can replace uncertainty with answers and give clinicians and families clearer information for decisions,” said Meyeon Park, Professor of Clinical Medicine at the University of California San Francisco, and co-chair of the summit. “This gathering was designed to help move genetics into real-world practice, with patients and families guiding how that work is done.”

From Specialized Testing to Routine Care

Summit sessions explored how nephrology practices can build workable systems for genetic testing, including deciding who may benefit, obtaining informed consent, collecting samples, communicating results, and knowing when to involve genetic counselors, laboratories or genetics specialists. Speakers emphasized that nephrologists do not need to become geneticists to serve as genetic kidney care proponents in their practices and communities.

Participants also discussed how to manage uncertain findings, including variants of uncertain significance, and how clinical details and appropriate family testing may help laboratories clarify results over time. Other sessions addressed testing for relatives, considerations for living kidney donors, equitable access, privacy and insurance concerns, and the importance of building clinical data systems that can support research and future clinical trials.

“Nephrologists can be kidney genetics champions by helping patients understand when genetic testing may be useful and what the results could mean for their care and their families,” said Christopher Kwoh, MD, Nephrologist at The Kidney Institute in Houston, TX, and co-chair of the summit. “When practices create simple systems for ordering tests, reviewing results and getting help, genetic testing can become a realistic part of everyday kidney care.”

Patients Call for Answers, Trust and Whole-Person Care

Patient speakers described how inherited kidney disease can affect entire families across generations. Their stories underscored the emotional weight of living with an uncertain diagnosis, deciding whether relatives or children should be tested, planning a family, preparing for dialysis or transplantation and navigating a health system that may not always feel accessible or trustworthy.

They urged clinicians to begin with the person, not only the test results but to ask how patients are doing, explain choices clearly, recognize the effect on the whole family and make genetic services available across racial, cultural, geographic, and economic differences.

“This is multi-generational trauma, and we must treat it like that, said Katie Reed, a kidney transplant receipt, advocate, and speaker at the summit. I think about the rural mom who does not have the ability to take time off and get to appointments to get tested. I think about certain disadvantaged populations that are sitting on dialysis because they have hypertension. Let’s make sure that we are really evaluating those individuals and not just making assumptions,” added Reed.

Joshua Albright, another advocate and speaker, talked about getting diagnosed with kidney disease six years ago at age 17. Albright said from his journey he wanted people to takeaway that there is hope with new therapies and treatments. “There can be more patients like me that walk into a room being diagnosed but now they can have more options than being on dialysis or steroids. It gives people hope and hope is the word that I want us to take away from this conversation,” said Albright.

Building the Next Phase of Kidney Care

The summit also highlighted how quickly the science of kidney genetics is advancing. Over the past decade, the field has moved from slower, gene-by-gene methods toward next-generation sequencing that can examine many genes at once. Genome-wide association studies can identify genetic differences linked to disease across large populations.

Experts also discussed how polygenic risk scores, which combine the effects of many genetic differences, to estimate a person’s risk of developing kidney disease. Unlike tests that look for a single cause of a rare inherited condition, these scores may eventually help access kidney risk across large populations. Researchers are also developing kidney genetic scorecards that combine genetic findings with other biological information to better understand how kidney disease develops and identify the findings most relevant to patient care.

Together, these advances may help reveal the biological pathways that drive kidney disease, identify people who may qualify for genotype-specific studies and help guide development of more precise therapies. Participants were encouraged to organize genetic results in ways that support follow-up care, variant reclassification, and clinical trial readiness.

NKF will use insights from the summit to support continued education, stronger collaboration and practical implementation of genetic testing across kidney care settings. The work builds on NKF efforts to connect nephrologists, fellows, genetic counselors, other clinicians, patients, researchers and partner organizations around evidence-informed approaches to genetic kidney disease and translate guidance into everyday patient care. To learn more about the conference go here: https://cme.kidney.org/spa/app/resource/r956-2026-genetics-in-kidney-disease-summit/event/home 

About Kidney Disease

In the United States, CKD remains an under-recognized public health burden that impacts 1 in 7 adults, and 90 percent of those affected are unaware of their condition. Approximately 1 in 3 U.S. adults are at risk for CKD, but less than 20% are assessed with guideline-recommended testing, eGFR and uACR. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity, and family history. People of Black or African American, Hispanic or Latino, American Indian or Alaska Native, Asian American, or Native Hawaiian or Other Pacific Islander descent are at increased risk for developing the disease. Black or African American people are about four times as likely as White people to develop kidney failure. Hispanic and Native American people experience kidney failure at approximately double the rate of White people.

About the National Kidney Foundation

The National Kidney Foundation is revolutionizing the fight to save lives by eliminating preventable kidney disease, accelerating innovation for the dignity of the patient experience, and dismantling structural inequities in kidney care, dialysis, and transplantation. For more information about NKF, visit www.kidney.org.

View original content to download multimedia:https://www.prnewswire.com/news-releases/national-kidney-foundation-summit-advances-genetic-testing-in-everyday-kidney-care-302894525.html

SOURCE National Kidney Foundation