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R E S O L U T I O N
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WHEREAS, Focal segmental glomerulosclerosis is a rare |
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condition that frequently leads to chronic kidney disease and |
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kidney failure; and |
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WHEREAS, FSGS causes scarring in the glomeruli, the small |
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filters in the kidney that remove waste from the blood; it often |
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progresses rapidly to kidney failure, with half of FSGS patients |
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requiring dialysis or a kidney transplant within 5 to 10 years of |
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diagnosis; and |
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WHEREAS, According to the RaDaR Database, patients with rare |
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kidney conditions such as FSGS make up just 5 to 10 percent of |
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chronic kidney disease patients but account for approximately |
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30 percent of kidney failure; and |
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WHEREAS, Commonly diagnosed in adulthood and most prevalent |
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in individuals over age 45, FSGS occurs in certain populations, |
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including those with African ancestry, at much higher rates than in |
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the general population; many patients face delays in being |
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diagnosed with FSGS, due to the difficulty of rare disease |
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diagnosis, which takes an average of five to seven years, and the |
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limited availability of specialized care for rare kidney diseases; |
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moreover, some FSGS patients experience delays in accessing kidney |
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transplants; and |
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WHEREAS, FSGS imposes a heavy burden on the U.S. health care |
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system; a 2019 study estimated that the disease costs public and |
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private health insurers about $2 billion annually; and |
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WHEREAS, There is new hope for patients with FSGS, with |
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clinical trials underway for products that may delay the |
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progression of FSGS and the onset of kidney disease; patients, |
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families, health care providers, researchers, and advocacy |
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organizations like NephCure and the Texas Kidney Foundation are |
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working tirelessly to promote early detection and to develop |
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innovative therapies for FSGS and other rare kidney diseases; a |
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patient-led and community-based organization, the Texas Kidney |
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Foundation conducts comprehensive kidney screenings as well as |
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genetic testing specifically focused on identifying rare kidney |
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diseases, including more than 300 rare and chronic kidney |
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conditions; through these innovative efforts, the foundation plays |
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a vital and unique role in advancing early diagnosis, empowering |
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patients through education and awareness, and expanding statewide |
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access to personalized and proactive treatment options; and |
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WHEREAS, FSGS Awareness Day serves as an important means to |
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inform the public and the medical community about this deadly |
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disease, to provide support and inspiration to FSGS patients and |
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their families, and to promote better access to diagnosis and |
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treatment; now, therefore, be it |
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RESOLVED, That the Senate of the 89th Texas Legislature |
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hereby recognize June 10, 2025, as FSGS Awareness Day. |