HONUS Study for FSGS and IgAN Do you or your loved one suffer from FSGS or IgAN? We are asking you to complete a survey about your experience living with these rare kidney diseases. Humanistic Burden of Rare KidNey Diseases: Understanding the impact of FSGS and IgAN on Patients and Caregivers Study (HONUS) HONUS is a global research study focused on understanding the real-world impact of two rare kidney diseases on patients and their caregivers. Why should I participate? Similar to the way researchers study diseases to better treat and, eventually cure them, it is equally important to study and understand the lived experiences of patients and caregivers impacted by rare kidney disease like FSGS and IgAN. Gaining more insight into how diseases affect people’s quality of life, work, school and other lifestyle factors will help us understand both physical and lifestyle implications. How long is the survey? The survey is divided into different sections. We estimate it will take you 20-40 minutes to complete. Who is eligible to participate? Both adult patients with FSGS or IgAN who have either early- (not requiring renal dialysis or kidney transplant) or late-stage (requiring dialysis or kidney transplant) kidney disease and the primary family caregiver of these patients And parents/caregivers of children or adolescents with FSGS or IgAN If I choose to participate, will I be paid for my time? Yes — we know how busy life is! All participants who complete the survey will receive an Amazon gift card for their time (based on survey length, $60 for adult patients and parents/caregivers of children and adolescents, and $45 for adult patient caregivers with links to download an Amazon gift card provided on survey completion). I am ready to participate. What’s next? Contact Kelly Helm at khelm@nephcure.org to receive a link to the survey.