Introduction
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 APOL1-mediated kidney disease (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. 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.
Treatments for AMKD are rapidly advancing, and the American Kidney Fund (AKF) is working to ensure the voices of those in the AMKD community are considered by decision-makers in the medical field. Your response to this survey will help to inform the U.S. Food and Drug Administration (FDA), biopharmaceutical companies, researchers, and healthcare providers about what matters most to individuals affected by AMKD.
Responses to this survey will be combined with what we hear by speaking directly with AMKD community members during interviews and at a Roundtable. This information will be summarized in a report that AKF will share with key decision makers and the public in Fall 2026.
Please feel free to share the survey link with others whose lives are affected by AMKD, including your own family members. Thank you for sharing your time and lived expertise to help inform the future of AMKD treatments.
All survey responses are anonymous unless otherwise specified.
Upon completion, you will have the opportunity to enter a drawing for a $50 Amazon gift card.
This survey should take about 20 minutes to complete.
