Recognizing June 10, 2025, as FSGS Awareness Day.

89(R) SR 515 - Enrolled version - Bill Text

SENATE RESOLUTION NO. 515

WHEREAS, Focal segmental glomerulosclerosis is a rare

condition that frequently leads to chronic kidney disease and

kidney failure; and

WHEREAS, FSGS causes scarring in the glomeruli, the small

filters in the kidney that remove waste from the blood; it often

progresses rapidly to kidney failure, with half of FSGS patients

requiring dialysis or a kidney transplant within 5 to 10 years of

diagnosis; and

WHEREAS, According to the RaDaR Database, patients with

rare kidney conditions such as FSGS make up just 5 to 10 percent

of chronic kidney disease patients but account for approximately

30 percent of kidney failure; and

WHEREAS, Commonly diagnosed in adulthood and most

prevalent in individuals over age 45, FSGS occurs in certain

populations, including those with African ancestry, at much

higher rates than in the general population; many patients face

delays in being diagnosed with FSGS, due to the difficulty of

rare disease diagnosis, which takes an average of five to seven

years, and the limited availability of specialized care for rare

kidney diseases; moreover, some FSGS patients experience delays

in accessing kidney transplants; and

WHEREAS, FSGS imposes a heavy burden on the U.S. health

care system; a 2019 study estimated that the disease costs public

and private health insurers about $2 billion annually; and

WHEREAS, There is new hope for patients with FSGS, with

clinical trials underway for products that may delay the

progression of FSGS and the onset of kidney disease; patients,

families, health care providers, researchers, and advocacy

organizations like NephCure and the Texas Kidney Foundation are

working tirelessly to promote early detection and to develop

innovative therapies for FSGS and other rare kidney diseases; a

patient-led and community-based organization, the Texas Kidney

Foundation conducts comprehensive kidney screenings as well as

genetic testing specifically focused on identifying rare kidney

diseases, including more than 300 rare and chronic kidney

conditions; through these innovative efforts, the foundation plays

a vital and unique role in advancing early diagnosis, empowering

patients through education and awareness, and expanding statewide

access to personalized and proactive treatment options; and

WHEREAS, FSGS Awareness Day serves as an important means to

inform the public and the medical community about this deadly

disease, to provide support and inspiration to FSGS patients and

their families, and to promote better access to diagnosis and

treatment; now, therefore, be it

RESOLVED, That the Senate of the State of Texas, 89th

Legislature, hereby recognize June 10, 2025, as FSGS Awareness Day.

Campbell

________________________________

President of the Senate

I hereby certify that the

above Resolution was adopted by

the Senate on May 14, 2025.

________________________________

Secretary of the Senate

________________________________

Member, Texas Senate