Bill Text: IL SR0757 | 2025-2026 | 104th General Assembly | Introduced

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Bill Title: Declares June 9, 2026 as FSGS Awareness Day in the State of Illinois to bring attention to focal segmental glomerulosclerosis (FSGS) disease.

Sponsorship: Partisan Bill (Democrat 1)

Status: (Passed) 2026-05-30 - Resolution Adopted [SR0757 Detail]

Download: Illinois-2025-SR0757-Introduced.html

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SR0757 LRB104 21607 RMO 37068 r
SENATE RESOLUTION
WHEREAS, Approximately 1 in 7 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 scarring in the
kidneys, often leading to a difficult journey that can, in
many cases, result in kidney failure, requiring dialysis,
transplants, and cycles of remissions and relapse; and
WHEREAS, Of patients with FSGS, 50% of them require
dialysis or a kidney transplant within 5 to 10 years of
diagnosis; and
WHEREAS, FSGS is a severe disease because it often
progresses rapidly to kidney failure, and even for patients
who receive a kidney transplant, it can recur in their
transplanted kidney up to 50% of the time; and
WHEREAS, While FSGS can be diagnosed at any age, it is most
commonly diagnosed in adults rather than in children and most
prevalent in adults over 45 years of age; and

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WHEREAS, FSGS is a burden on our healthcare system, with a
2019 study estimating that the disease costs Medicaid,
Medicare, and private health insurance approximately $2
billion annually in direct medical costs, not including
indirect and quality of life costs; and
WHEREAS, According to data from the National Registry of
Rare Kidney Diseases (RaDaR), rare kidney diseases such as
FSGS comprise only 5% to 10% of chronic kidney disease
patients but account for approximately 30% of kidney failure;
and
WHEREAS, Many patients face delays in being diagnosed with
FSGS, due both to the difficulty of the rare disease
diagnostic odyssey, averaging 5 to 7 years, and challenges in
accessing nephrology care that specialize in rare kidney
diseases due to the current shortage in the United States; and
WHEREAS, FSGS disproportionately impacts minority
populations, including African Americans, often occurring at a
rate 4 to 5 times higher than white Americans; and
WHEREAS, Due to certain variants of the APOL1 gene that
significantly increase the risk of developing FSGS and other
kidney diseases and the fact that these high-risk variants are
found almost exclusively in individuals of African ancestry,

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the condition contributes to the disproportionate burden of
kidney disease in Black communities; and
WHEREAS, FSGS is a significant burden not only to the
health and lives of patients and their families but also
because the condition incurs great challenges for the
healthcare system and healthcare financing in Illinois; and
WHEREAS, There is new hope for patients with FSGS, as
clinical trials are underway for products that may delay
progression of the condition 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 PARASOL, or
Proteinuria and GFR as Clinical Trial Endpoints in FSGS,
Project to validate proteinuria as an indicator of improvement
in patients; and
WHEREAS, Patients, families, advocacy organizations such
as NephCure, healthcare providers, the healthcare industry,
and researchers are working tirelessly to raise awareness,
promote early detection, and develop new innovative therapies
for FSGS patients and those living with other rare kidney
diseases in Illinois; and
WHEREAS, FSGS Awareness Day is designated to raise

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awareness of FSGS, to provide support and inspiration to
patients and families struggling with the disease, and to
promote the efforts needed for better diagnosis and access to
future treatments that can transform the course of the
condition; therefore, be it
RESOLVED, BY THE SENATE OF THE ONE HUNDRED FOURTH GENERAL
ASSEMBLY OF THE STATE OF ILLINOIS, that we declare June 9, 2026
as FSGS Awareness Day in the State of Illinois to bring
attention to focal segmental glomerulosclerosis (FSGS)
disease.