American Kidney Fund Marks Third Annual AMKD Awareness Day, Launches New Coalition to Address Genetic Kidney Disease

ROCKVILLE, Md. — The American Kidney Fund on Tuesday marked the third annual APOL1-Mediated Kidney Disease (AMKD) Awareness Day, an initiative aimed at increasing public understanding of a genetic form of kidney disease that disproportionately affects people of African ancestry.

The awareness day, observed during National Minority Health Month, seeks to educate communities about AMKD, a rapidly progressing condition linked to variants of the APOL1 gene. Health advocates say the disease can develop at a young age and often advances more aggressively than other forms of kidney disease.

“Most people are unaware of the fact that APOL1-mediated kidney disease advances faster than many other kidney diseases,” said LaVarne A. Burton, president and CEO of the American Kidney Fund, in a statement. “The more you know about your ancestry, the better you can protect your future, and your family’s future.”

Higher Risk Among Black and Latino Communities

While everyone carries two copies of the APOL1 gene, individuals of African descent are more likely to inherit variants associated with the disease. According to the American Kidney Fund, an estimated 13% of Black Americans carry two APOL1 risk variants, which corresponds to roughly a 20% chance of developing kidney disease.

Those at increased risk include people who identify as Black, African American, African, Afro-Caribbean, or Hispanic/Latino with African ancestry.

Researchers first identified the link between APOL1 gene variants and kidney disease about 15 years ago, and studies into the condition continue to expand.

New Coalition Aims to Strengthen Response

As part of this year’s observance, the organization announced the formation of the APOL1 Coalition, a multi-year initiative designed to coordinate research, improve resource sharing and identify key priorities in addressing AMKD.

The coalition includes patient advocates, scientists, industry representatives and professional organizations. Support for the initiative is being provided by AstraZeneca.

In addition, awareness efforts are backed by Vertex Pharmaceuticals, which is partnering with the American Kidney Fund to expand education and advocacy initiatives.

“AMKD Awareness Day is an important opportunity to elevate the voices and experiences of people and their families affected by this disease,” said Amit Sachdev, chief patient and external affairs officer at Vertex Pharmaceuticals.

Outreach Efforts Expand Nationwide

Organizers say this year’s campaign includes a range of educational and advocacy activities, including:

• Community education through partnerships with Black Greek Letter Organizations

• Presentations by trained kidney health coaches

• Webinars highlighting emerging research and patient care standards

• Outreach in medical offices and through media campaigns

• Spanish-language materials and targeted messaging in urban radio markets

The campaign also includes a podcast episode of “The Kidney Collective,” featuring Burton and former NBA star Alonzo Mourning, who has been diagnosed with AMKD and is raising awareness about the condition.

Advocacy efforts tied to the initiative include support for federal legislation aimed at improving kidney disease prevention and expanding access to genetic counseling services.

Continued Push for Awareness

AMKD Awareness Day is observed annually on the last Tuesday of April. Advocates say increasing awareness is critical, particularly among populations most at risk, to encourage early detection and proactive health decisions.

Supporters are encouraged to share educational materials and participate in outreach efforts using the hashtag #APOL1aware.

The American Kidney Fund estimates that 1 in 7 Americans is affected by kidney disease, with millions more at risk.

For more information, please visit KidneyFund.org, or connect on Facebook, Twitter, Instagram and LinkedIn.