Press release

American Kidney Fund Announces Support from Vertex Pharmaceuticals Inc. to Raise Awareness and Increase Education of the APOL1 Gene and its Link to Kidney Disease

AKF is pleased to announce that Vertex Pharmaceuticals Inc. is providing support for its education and awareness campaign about the apolipoprotein L1 (APOL1) gene and its link to kidney disease

ROCKVILLE, Md. (March 29, 2022) – The American Kidney Fund (AKF) today announced that Vertex Pharmaceuticals Inc. is providing support for AKF's education and awareness campaign about the apolipoprotein L1 (APOL1) gene and its link to kidney disease in people of African and Caribbean descent.

While every person has the APOL1 gene, variants of the gene are connected to higher rates of severe kidney disease in people of African and Caribbean descent. For example, people diagnosed with focal segmental glomerulosclerosis (FSGS) — a rare kidney disease that causes scarring on the kidneys' filters — are 17 times more likely to have the APOL1 genetic variant. Through this new campaign, AKF and Vertex aim to increase awareness and education about the connection between APOL1 and kidney disease and the need for increased genetic testing.

"Combatting health disparities in the diagnosis and treatment of kidney disease has been a longstanding focus of AKF's. Through this new campaign, we are turning a special focus to populations of color affected by the APOL1 gene variant," said LaVarne A. Burton, AKF President and CEO. "We are proud to partner with Vertex on this campaign to increase education and access to resources for those individuals in need and are grateful for their ongoing support for AKF's work and mission to fight kidney disease on all fronts and help people live healthier lives."

For the campaign, AKF will develop an APOL1 "brain trust" consisting of a group of people with kidney disease attributed to the APOL1 variant and a health care professional expert on the subject. Through individual interviews, the brain trust will inform the campaign's strategies and tactics to ensure education gaps are being adequately addressed. Patient-facing resources that will be developed as a result of the brain trust's findings will include digital engagement tools, including how to find a genetic counselor, and a dedicated webpage with enhanced educational materials and a patient experience video series. Because APOL1 as a potential genetic marker for kidney disease remains a topic new to many health care professionals, AKF's campaign will also educate them about the role of variants in kidney genetics and their potential impact on people of color via a professional-facing webinar and education materials.

"At Vertex, we're committed to supporting those living with APOL1-mediated kidney disease and continuing to increase awareness of this disease," said Amit Sachdev, Chief Patient Officer at Vertex Pharmaceuticals. "We're proud to support AKF and this effort to increase awareness of APOL1-mediated kidney disease and provide education and resources to those who are diagnosed."

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.

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