WHEREAS, Approximately one in seven American adults have chronic kidney disease, and the third leading cause of chronic kidney disease is glomerulonephritis, often caused by rare kidney diseases such as focal segmental glomerulosclerosis (FSGS); and
WHEREAS, FSGS is a condition referring to the scarring in the kidneys, often leading to a difficult condition that can, in many cases, result in kidney failure, requiring dialysis, transplant, and often cycles of remissions and relapse; and
WHEREAS, Fifty percent of patients with FSGS require dialysis or a kidney transplant within 5 to 10 years of their diagnosis; and
WHEREAS, FSGS is a severe disease because it often progresses rapidly to kidney failure, and even for patients with primary FSGS who receive a kidney
transplant, FSGS can recur in their transplanted kidney up to 50 percent of the time; and
WHEREAS, FSGS can be diagnosed at any age, but is most commonly diagnosed in adults rather than in children and is most prevalent in adults over 45 years of age; and
WHEREAS, According to the National Registry of Rare Kidney Diseases (RaDaR) database in the United Kingdom, rare kidney diseases like FSGS make up just 5 to 10 percent of chronic kidney disease patients, but account for approximately 30 percent of kidney failure; and
WHEREAS, Many patients face delays in being diagnosed with FSGS due to both the difficulty of obtaining a proper diagnosis of a rare disease, which averages five to seven years, and challenges in accessing nephrology care that specializes in rare kidney diseases, as there is currently a shortage of practitioners in the United States; and
WHEREAS, FSGS disproportionately impacts minority populations, including African Americans, often occurring at a rate four to five times higher than white Americans; and
WHEREAS, Because certain variants of the APOL1 gene significantly increase the risk of developing FSGS and other kidney diseases and these high-risk variants are found almost exclusively in individuals of African ancestry, FSGS contributes to the disproportionate burden of kidney disease in Black communities; and
WHEREAS, FSGS is a significant burden, not just to the health and lives of patients and their families, but also because it incurs great challenges and costs for California’s health care system. A 2019 study estimated that FSGS costs Medicaid, Medicare, and private health insurance about $2 billion annually in direct medical costs, not including indirect and quality of life costs; and
WHEREAS, There is new hope for patients with FSGS, with clinical trials underway for products that may delay progression of FSGS and the onset of kidney disease, including the first FDA-approved therapy in April 2026, and significant progress is being made by scientists, regulators, patient groups, and industry through the Proteinuria and Other Biomarkers as Endpoints for Clinical Trials in Kidney Disease (PARASOL) Project to validate proteinuria as an indicator of improvement in patients; and
WHEREAS, Patients, families, advocacy organizations like NephCure, health care providers, industry, and researchers are working tirelessly to raise awareness, promote early detection, and develop new innovative therapies for FSGS and other rare kidney diseases for patients living in California; and
WHEREAS, FSGS Awareness Day is designated to raise awareness of FSGS, provide support and
inspiration to patients and families struggling with the disease, and promote the efforts needed for better diagnosis and access to future treatments that can transform the course of the disease; now, therefore, be it
Resolved by the Assembly of the State of California, That the Assembly designates June 9, 2026, as FSGS Awareness Day; and be it further