New Orleans — A public-private project, the Early Measures in Black and African-American Communities to Raise Kidney Disease (EMBARK) Awareness initiative, is helping to identify people at high risk for apoliprotein-L1 (APOL1)-mediated kidney disease (AMKD) and connect them with medical care.

Since November 2024, EMBARK, a partnership between the GlomCon Foundation, industry sponsors, and community groups, has conducted 15 free education and screening events in churches, community wellness programs, and/or Historically Black Colleges and Universities in 12 US cities, the program’s medical director Gentzon Hall, said in a presentation at the National Kidney Foundation (NKF) 2026 Spring Clinical Meetings.

“EMBARK is a program designed to bring kidney health education and screening opportunities to communities at risk for glomerular disease,” Hall, MD, PhD, assistant professor of medicine at Duke University, Durham, North Carolina, told Medscape Medical News. The program provides education, chronic kidney disease (CKD) screenings, genetic testing, and specialist nephrology care for those identified as at high risk.

“Our first efforts were directed at AMKD because there has been a relatively recent explosion of understanding about the genetic basis. Some of what we previously observed as a predisposition for African Americans or other people of the Diaspora to develop CKD and even kidney failure has a historical genetic connection,” Hall explained.

Specifically, the variants G1 and G2 in the protein that encodes APOL1 evolved in West and sub-Saharan Africa to confer resistance to the trypanosomal parasites that induce sleeping sickness also increase the risk for CKD. Today, at least a third of the people worldwide whose ancestors trace back to Africa carry at least one copy of a kidney risk variant (KRV) and about 13% carry two KRVs, placing them at a high risk for AMKD.

“Given the early age of onset and potential for rapid progression, there is an urgent need to identify individuals at high risk through genetic testing and to connect them with nephrology care,” Hall said.

Of 648 people with the evidence of CKD who were screened at EMBARK events, 258 were of Black/African ancestry, had ≥ 1+ proteinuria, and no prior history of diabetes, kidney disease or transplant, qualifying them for APOL1 KRV testing. Of those, 58 had positive tests for G1 or G2, and 33 had two KRVs, ie, the high-risk genotype. An additional 14 individuals had other CKD genetic findings.

Having two KRVs doesn’t guarantee that the person will develop AMKD/focal segmental glomerulosclerosis (FSGS), but their risk dramatically increases following a second “hit,” such as a viral infection or autoimmune disease. Common triggers include HIV and SARS-CoV-2 infections.

“It’s a risk. So a patient walking around with these variants would do better by establishing care with a nephrologist early, someone that can closely observe their kidney function and look for the first appearance of things like proteinuria or development of hypertension, which can happen in younger people…We’re really trying to minimize the time between identification of the issue and when care is delivered,” Hall told Medscape Medical News.

Moreover, identifying individuals at risk means that their family members can also be brought into the system for screening, and those identified can be equipped to inform others, participate in ongoing clinical trials, and receive new treatments when they come to market, he noted.

The initiative also aims to create a physician community. “With EMBARK, we want to create a certain degree of awareness around the issue, so that it becomes more commonly thought of when a patient who may be at risk comes through the door. We want clinicians of all specialties to recognize the AMKD phenotype and understand which individuals could benefit from deeper inquiry,” Hall said.

Associated Mentorship Programs

In support of the EMBARK Initiative and to increase interest in the field of nephrology among underrepresented trainees, Hall has developed two companion nephrologist-led mentoring programs called the Mentored Internship Program in Nephrology (MIPiN) and the Kidney Health College Ambassador Program (KHCAP).

He described those two programs in a separate poster presentation at the meeting. The MIPiN, created in 2023, pairs students from Historically Black Colleges and Universities with academic nephrologists for “an intensive 1-year research and clinical shadowing experience,” in which interns receive mentoring, research funding, academic credit, a stipend, and the chance to attend the annual American College of Nephrology Kidney Week conference.

The KHCAP, launched in 2025, trains undergraduates as CKD peer educators. In its pilot semester, student ambassadors spent 4 months on peer education activities such as social media content creation and posting, tabling events, and participation in EMBARK educational and screening events.

Thus far, eight students have been recruited for MIPiN and six for KHCAP. All are sophomores or higher, and all have grade point averages of 3.31 or above.

“Because AMKD can present in young people as focal segmental glomerulosclerosis or hypertensive nephrosclerosis, we want to capture them early…We want them to know that while right now we don't have anything we can really do to give them their kidney function back, we can do a fair amount to help protect what they have,” he said.

On April 16, 2026, the FDA approved a new indication for sparsentan (Filspari) tablets for reducing proteinuria in patients aged 8 years or older with FSGS without nephrotic syndrome, the first-ever drug with that indication. Sparsentan was previously approved for treating adults with primary immunoglobulin A nephropathy. It has not yet been proven to work in AMKD, but research is ongoing, Hall said.

Bringing Disparities to Light

Asked to comment, NKF immediate past president Sylvia E. Rosas, MD, director of the Latino Kidney Clinic and associate professor of medicine at Harvard Medical School, Boston, told Medscape Medical News, “GlomCon is a great resource for education on glomerular diseases for trainees and faculty…Screenings for CKD with serum creatinine and urine albumin to creatinine ratio is the only way to diagnose and treat the CKD early.”

Tikko Robinson, a nephrology physician assistant at Tufts Medical Center, Boston, who has a special interest in AMKD, told Medscape he thought the EMBARK program was “a phenomenal idea,” for several reasons.

“One — to bring to light health disparities in kidney care and identify patients who otherwise wouldn’t know that they had kidney disease,” he said.

The other thing that struck him were the mentorship programs for trainees who may themselves suffer health disparities, “to move them towards being the next set of leaders in medicine.”

It’s not only providing “screening and trying to help people understand the risk they face but also having people who are going to be affected in those populations have leaders that look like them,” said Robinson.

Hall reported receiving support for EMBARK from Travere, Vertex, Otsuka, and Natera. Rosas reported receiving research funding to her institution from Bayer, being on the steering committee for FineOne, and being on scientific advisory boards for Bayer, Novo Nordisk, and Travere. Robinson had no disclosures.

Miriam E. Tucker is a freelance journalist based in the Washington, DC, area. She is a regular contributor to Medscape, with other work appearing in the Washington Post, NPR’s Shots blog, and Diatribe. She is on X @MiriamETucker and BlueSky @miriametucker.bsky.social.