Newly established AMKD Coalition unites leading voices to address need to heighten awareness of APOL1-mediated kidney disease (AMKD)

Today marks the third annual APOL1-Mediated Kidney Disease (AMKD) Awareness Day, a day established by the American Kidney Fund (AKF) to encourage others to be “APOL1 Aware” by educating communities about this genetic form of rapidly progressing kidney disease. Support for AMKD Awareness Day is provided by Vertex Pharmaceuticals Incorporated.

In support of its work on AMKD, AKF is proud to announce the newly established APOL1 Coalition, a multi-year project to define priority needs, strengthen collaboration and centralize resources about AMKD. Charter members of the coalition, many of whom have been at the forefront of efforts to increase understanding of AMKD, include leading patient advocates, scientists, industry members and professional organizations. Support for the APOL1 Coalition is provided by AstraZeneca.

“Most people are unaware of the fact that APOL1-mediated kidney disease advances faster than many other kidney diseases and can develop at a young age. AMKD’s aggressive nature compels us to ensure that people who could be at risk are informed so that they can be proactive about their kidney health,” said LaVarne A. Burton, President and CEO of AKF. “The American Kidney Fund calls on communities to support our efforts to drive awareness and education about AMKD. The more you know about your ancestry, the better you can protect your future, and your family’s future.”

Who does AMKD affect?

While everyone has two copies of the APOL1 gene, people of certain African ancestry are more likely to have APOL1 gene variants (mutations) that cause AMKD. People who are Black, African American, African, Afro-Caribbean, and/or Hispanic/Latino with two inherited APOL1 risk variants have an increased likelihood of developing AMKD.

An estimated 13% of Black Americans have two APOL1 variants, which carries a roughly 1 in 5 risk of developing kidney disease

The link between the APOL1 gene variants and kidney disease was discovered recently—about a decade and a half ago—but research into understanding the disease is advancing steadily.

AMKD awareness, education, advocacy and outreach activities

As part of this year’s AMKD Awareness Day, a special episode of AKF’s podcast, The Kidney Collective, is now live, featuring a conversation between Burton and Alonzo Mourning, basketball Hall-of-Famer diagnosed with AMKD and paid spokesperson for Vertex Pharmaceuticals. Burton will also provide remarks today about AMKD at the National Minority Quality Forum’s Annual National Leadership Summit on Health Disparities.

“AMKD Awareness Day is an important opportunity to elevate the voices and experiences of people and their families affected by APOL1-mediated kidney disease,” said Amit Sachdev, Chief Patient and External Affairs Officer at Vertex Pharmaceuticals. “Vertex is proud to partner with the American Kidney Fund to deepen education, advance advocacy and better support those most impacted by this genetic kidney disease.”

Ongoing education, awareness and advocacy efforts also include:

Educational sessions on AMKD at the National Society of Black Engineers Annual Convention and the Renal Physicians Association conference in April
Collaborating with organizations such as Black Greek Letter Organizations on educational efforts
Training AKF’s Kidney Health Coaches to present about AMKD in their local communities.
Hosting a professional webinar about AMKD, highlighting research and evolving standards of AMKD patient care
Educational messaging in doctors’ offices across the country
Working with influencers to amplify educational information about AMKD
Translating educational materials to Spanish
Promoting educational messages in select Urban One radio markets
AKF Ambassadors are advocating for passage of the New Era of Preventing End-Stage Kidney Disease Act and the Access to Genetic Counselor Services Act with their members of Congress.

AMKD Awareness Day is recognized annually on the last Tuesday of April during National Minority Health Month.

It’s not too late to help spread awareness of AMKD and its connection to kidney disease— supporters may download the AMKD Awareness Day Community Toolkit, which includes resources to share on social media, within a workplace or community organizations and more. They can also find AMKD Awareness Day graphics to share at https://socialpresskit.com/amkd and use the hashtag #APOL1aware.

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About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nonprofit with the greatest direct impact on people with kidney disease. AKF works on behalf of the 1 in 7 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. AKF fights for kidney health for all through programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy. AKF is one of the nation’s top-rated nonprofits, investing 96 cents of every donated dollar in programs, and it has received 24 consecutive 4-Star ratings from Charity Navigator as well as the Platinum Seal of Transparency from Candid, formerly known as GuideStar.

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

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