This bill aims to prevent end-stage kidney disease by establishing research centers, improving diagnostics, and training healthcare providers to better identify and treat rare kidney diseases. It creates regional Centers of Excellence for Rare Kidney Disease Research through the National Institute of Diabetes and Digestive and Kidney Diseases, funded at six million dollars annually through fiscal year 2028, to conduct research and increase public awareness particularly in rural and underserved communities. The legislation also requires the Secretary of Health and Human Services to conduct a comprehensive study on testing and treatment methods for rare kidney diseases, including genetic testing and diagnostic barriers, with results due within 18 months. Additionally, it funds education programs to train primary care providers and nephrologists about rare kidney disease prevention and diagnosis, with special attention to populations disproportionately affected by these conditions. The bill authorizes one million dollars annually through 2028 for the study and evaluation of treatment methods designed to delay or prevent the need for dialysis and transplants.
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