The Journey to Advocacy: Celebrating the IgA Nephropathy Foundation's 20th Anniversary

The IgA Nephropathy Foundation was established in 2004 by Bonnie and Ed Schneider, the concerned parents of a young boy diagnosed with IgA nephropathy (IgAN). At the time the Foundation was established, patients had trouble finding the most basic information about IgAN, and few nephrologists had experience with this rare disease. Celebrating its 20th anniversary this year, the Foundation has been instrumental in bringing the IgAN community together through research grants, advocating for patients and caregivers, offering patient support services, and becoming the go-to source for information and education. A big focus for the Foundation is communicating the "voice of the patient" to the medical community to help identify needs and provide insight into the lives of IgAN patients and caregivers. The Foundation is very active in getting the word out, attending the last two International Symposia on IgA Nephropathy, in Prague, Czech Republic, and Tokyo, Japan. The Foundation also sponsored the IgA Nephropathy Seminar Day at the 6th CKD Summit in Boston in spring 2024. This article chronicles some of the Foundation's key milestones, highlights patient-facing and point-of-care resources, and provides key insights into the patient experience as well as tips for how clinicians can best meet patients where they are, bridge gaps, and improve care. The unmet needs of the IgAN community continue to drive the IgA Nephropathy Foundation's purpose and steadfast commitment to finding a cure for this rare disease.