20250HR__011399INT INTRODUCED 2026-05-18 REVISED 2026-06-11 2025 HR INT Introduced by Assembly Member Jeff Gonzalez (Coauthors: Assembly Members Addis, Aguiar-Curry, Ahrens, Alanis, Arambula, Ávila Farías, Bauer-Kahan, Bennett, Berman, Boerner, Bonta, Bryan, Calderon, Caloza, Carrillo, Castillo, Chen, Connolly, Davies, DeMaio, Dixon, Elhawary, Ellis, Fong, Gabriel, Garcia, Gipson, Mark González, Hadwick, Haney, Harabedian, Hart, Hoover, Irwin, Jackson, Johnson, Kalra, Krell, Lackey, Lowenthal, Macedo, McKinnor, Muratsuchi, Ortega, Pacheco, Papan, Patel, Patterson, Pellerin, Petrie-Norris, Quirk-Silva, Ramos, Rivas, Michelle Rodriguez, Rogers, Blanca Rubio, Sanchez, Schultz, Sharp-Collins, Solache, Soria, Stefani, Ta, Tangipa, Valencia, Wallis, Ward, Wicks, Wilson, and Zbur) LEAD_AUTHOR ASSEMBLY Jeff Gonzalez COAUTHOR ASSEMBLY Addis COAUTHOR ASSEMBLY Aguiar-Curry COAUTHOR ASSEMBLY Ahrens COAUTHOR ASSEMBLY Alanis COAUTHOR ASSEMBLY Arambula COAUTHOR ASSEMBLY Ávila Farías COAUTHOR ASSEMBLY Bauer-Kahan COAUTHOR ASSEMBLY Bennett COAUTHOR ASSEMBLY Berman COAUTHOR ASSEMBLY Boerner COAUTHOR ASSEMBLY Bonta COAUTHOR ASSEMBLY Bryan COAUTHOR ASSEMBLY Calderon COAUTHOR ASSEMBLY Caloza COAUTHOR ASSEMBLY Carrillo COAUTHOR ASSEMBLY Castillo COAUTHOR ASSEMBLY Chen COAUTHOR ASSEMBLY Connolly COAUTHOR ASSEMBLY Davies COAUTHOR ASSEMBLY DeMaio COAUTHOR ASSEMBLY Dixon COAUTHOR ASSEMBLY Elhawary COAUTHOR ASSEMBLY Ellis COAUTHOR ASSEMBLY Fong COAUTHOR ASSEMBLY Gabriel COAUTHOR ASSEMBLY Garcia COAUTHOR ASSEMBLY Gipson COAUTHOR ASSEMBLY Mark González COAUTHOR ASSEMBLY Hadwick COAUTHOR ASSEMBLY Haney COAUTHOR ASSEMBLY Harabedian COAUTHOR ASSEMBLY Hart COAUTHOR ASSEMBLY Hoover COAUTHOR ASSEMBLY Irwin COAUTHOR ASSEMBLY Jackson COAUTHOR ASSEMBLY Johnson COAUTHOR ASSEMBLY Kalra COAUTHOR ASSEMBLY Krell COAUTHOR ASSEMBLY Lackey COAUTHOR ASSEMBLY Lowenthal COAUTHOR ASSEMBLY Macedo COAUTHOR ASSEMBLY McKinnor COAUTHOR ASSEMBLY Muratsuchi COAUTHOR ASSEMBLY Ortega COAUTHOR ASSEMBLY Pacheco COAUTHOR ASSEMBLY Papan COAUTHOR ASSEMBLY Patel COAUTHOR ASSEMBLY Patterson COAUTHOR ASSEMBLY Pellerin COAUTHOR ASSEMBLY Petrie-Norris COAUTHOR ASSEMBLY Quirk-Silva COAUTHOR ASSEMBLY Ramos COAUTHOR ASSEMBLY Rivas COAUTHOR ASSEMBLY Michelle Rodriguez COAUTHOR ASSEMBLY Rogers COAUTHOR ASSEMBLY Blanca Rubio COAUTHOR ASSEMBLY Sanchez COAUTHOR ASSEMBLY Schultz COAUTHOR ASSEMBLY Sharp-Collins COAUTHOR ASSEMBLY Solache COAUTHOR ASSEMBLY Soria COAUTHOR ASSEMBLY Stefani COAUTHOR ASSEMBLY Ta COAUTHOR ASSEMBLY Tangipa COAUTHOR ASSEMBLY Valencia COAUTHOR ASSEMBLY Wallis COAUTHOR ASSEMBLY Ward COAUTHOR ASSEMBLY Wicks COAUTHOR ASSEMBLY Wilson COAUTHOR ASSEMBLY Zbur Relative to focal segmental glomerulosclerosis. focal segmental glomerulosclerosis

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 to 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 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 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 to percent of chronic kidney disease patients, but account for approximately 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 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 Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution. REVISIONS: Heading—Line 2.