Press release

American Kidney Fund Announces April 30 as the First Annual APOL1-Mediated Kidney Disease (AMKD) Awareness Day

Campaign aims to increase understanding and recognition of AMKD

ROCKVILLE, Md. (Jan. 25, 2024) – The American Kidney Fund (AKF) is proud to announce that April 30, 2024 will mark the nation's first ever AMKD Awareness Day. Building on AKF's educational campaign for the condition, AMKD Awareness Day aims to spread awareness of APOL1-mediated kidney disease (AMKD), a spectrum of kidney diseases associated with variants (mutations) in the apolipoprotein L1 (APOL1) gene and linked to an increased risk for rapidly progressing kidney disease in people of Western and Central African descent.

Everyone has two copies of the APOL1 gene, but people who have Western and Central African ancestry, including people who identify as Black, African American, Afro-Caribbean, and/or Latina/Latino, are at an increased risk of having a mutation in one or both of the genes. People with two mutations are at higher risk of developing genetic forms of kidney disease such as focal segmental glomerulosclerosis (FSGS).

It is estimated that 13% of Black Americans have two mutations of the APOL1 gene, and these individuals have a 1 in 5 chance of developing kidney disease.  

"The discovery of APOL1 variants less than 20 years ago was hailed as a significant breakthrough, and we now have a better understanding of how the APOL1 variants have played a role in health disparities in kidney disease," said AKF President and CEO LaVarne A. Burton. "In the United States, people of color are at increased risk for developing kidney failure, with Black Americans being four times more likely to need dialysis or a transplant. Unfortunately, not nearly enough people know about AMKD. We believe it is critical to raise national awareness of AMKD so that people will better understand their risk, start a conversation within their families and communities and be empowered to take action to protect their health, including consulting with a genetic counselor."

"Establishing this inaugural annual AMKD Awareness Day represents a significant and proud moment for the kidney health community," said Amit Sachdev, Chief Patient and External Affairs Officer at Vertex Pharmaceuticals. "We are honored to support AKF in highlighting the importance of increasing awareness of this disease and driving efforts to expand access to education and genetic testing resources." 

Coinciding with National Minority Health Month, AMKD Awareness Day will be recognized annually on the last Tuesday of April. AKF will be hosting an event on Capitol Hill in April to share resources and information with members of Congress and the public. Additionally, AKF will provide resources and ways to engage and raise awareness of the important connection between APOL1 gene variants and kidney disease in the months ahead. In the meantime, advocates and members of the public can help bring attention to AMKD among state legislatures across the country by requesting a proclamation from their governor. 

Find updates and more information at KidneyFund.org/AMKD-Day 

Support for AMKD Awareness Day is provided by Vertex Pharmaceuticals Incorporated. 

About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.

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