AMKD awareness efforts from our friends at GlomCon

The link between mutations (changes) in the APOL1 gene and fast-progressing kidney disease in communities of color (particularly people who identify as Black, African American, Afro-Caribbean or Latina/Latino) was identified in 2010. An estimated 13% of Black Americans in the U.S. have the two high-risk APOL1 gene mutations, which is associated with a 1 in 5 chance of developing kidney failure. This form of kidney disease advances more quickly than other types.  

Despite all this, awareness of this kind of kidney disease — called APOL1-mediated kidney disease (AMKD) — is still low. That is why AKF established the first-ever AMKD Awareness Day in 2024 and works throughout the year to make sure more people know about the impact of genetics on kidney health.

Fortunately, we are not alone in those efforts to educate and spread awareness. 

In fact, we have recently established our APOL1 Coalition, a multi-year project to define priority needs, strengthen collaboration and centralize resources about AMKD. Charter members of the coalition include leading patient advocates, scientists, industry members and professional organizations. 

One of those organizations is the GlomCon Foundation (GlomCon), which has been at the forefront of increasing awareness of AMKD. GlomCon is a global group focused on rare kidney disease, specifically on improving patient outcomes.

"We constantly scan the environment to see where the needs and the opportunities are, and certainly with AMKD, [we're] still not seeing the broad-based community sentiment around awareness to the level it could be, particularly at this time," said Junelle Speller, chief strategy officer at GlomCon, "It's been over 16 years since the genetic variant was identified as contributing to elevated risk of kidney disease and kidney failure in Black and African-Americans. So, we wanted to help raise awareness and educate the community."

A key GlomCon program for achieving this goal is EMBARK Awareness.

EMBARK Awareness Program

"EMBARK Awareness is a program that was started over a year ago in November 2024 to focus on individuals in the Black and brown communities who may be impacted by APOL1, the genetic variant that is disproportionately affecting those communities," explained Junelle. "We partner with trusted organizations to bring kidney health education and screening events to local communities."

The program began with just two kidney health events in Atlanta, Georgia, to see whether it could be scaled up into the national program it is now. During the events, general health information is collected from the person, such as body mass index (BMI), blood pressure and family history. They then provide a urine (pee) sample to check for protein in the urine (proteinuria), which can be a sign of kidney damage. 

After screening, a local nephrologist reviews each participant's results, discusses next steps and determines whether on-site genetic testing is appropriate. For eligible individuals, GlomCon provides genetic testing free of charge during the event. "There is a cheek swab that they undergo and then within three to four weeks usually, that information is then shared with the participants as to whether there is evidence of the high-risk genetic variant… we try to close the loop and we try not to leave people with unresolved questions and issues."

Screening and educating

Beyond the screenings, EMBARK events are also about education. "Whether that individual has a genetic disease or not, we're here to talk about kidney health," explained Junelle. "So many people don't even know where their kidneys are. So, we talk about anatomy, we talk about what the kidneys do. We talk about the origins and evolution of APOL1 and also cover other rare kidney diseases, which so many people don't know about."

They also provide information about how best to preserve your kidney function, including following a kidney-friendly eating plan, exercising and meeting regularly with your primary care doctor and/or nephrologist to ensure you know the current status of your kidneys. 

Importance of community

A critical part of the EMBARK program's success is GlomCon's willingness to partner with local organizations "to leverage their trust in the community."

"We can't just descend and say, 'hey, everybody, it's EMBARK,'" Junelle explained. "We reach out to faith-based organizations, Black Greek sororities and fraternities, historically Black colleges and universities, other universities, community organizations… We have that partnership. We promote together, we offer the event at their venue — and it's a really wonderful partnership and a way to engage the community effectively."

This is something AKF is also doing through our Kidney Health Coach program and other outreach. As part of GlomCon's education outreach in 2025, AKF President and CEO LaVarne Burton also spoke to medical students from historically Black colleges and universities (HBCUs) and medical schools on AMKD Awareness Day about the important of community-based approaches to care. 

But GlomCon doesn't just work with existing community: it also creates community. 

"We don't want [the screenings] to just be a one-time event," Junelle explained. "We offer a website, frequent social media content posted across most platforms and a monthly newsletter that shares kidney health education and includes program updates. We also share impact stories about individuals, caregivers and family members who are affected in any way by kidney disease, rare kidney disease or any chronic health issues."

The GlomCon community network also helps patients and caregivers connect with kidney disease experts and helps experts and researchers connect with each other. 

Other GlomCon efforts

The EMBARK Awareness Program is part of just one of three pillars of GlomCon's work — the patient education and outreach. GlomCon's work also focuses on education and training for physicians and on kidney disease research.

As part of the latter, GlomCon has created clinical registries for research projects examining the natural progression of different types of kidney diseases — without any intervention. They recently launched a registry for C3 glomerulopathy and plan to launch one later this year on IgA nephropathy. 

Junelle also said she's excited about another new venture for GlomCon: the Rare Kidney Disease Journal. The biannual publication will be fully open access with articles from researchers, healthcare professionals and patients from the global kidney community. They are currently accepting submissions and hope to have the first publication of the journal this summer.  

Moving forward together

"It's really wonderful to see AKF provide more in-depth information for those who have graduated beyond the initial introduction to kidney space," said Junelle. "AKF is doing so much wonderful work in the kidney community, and whenever we find any areas of alignment… [we] look forward to doing even more together."