89R29996 CJM-D
By: Campbell S.R. No. 515
R E S O L U T I O N
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 89th Texas Legislature
hereby recognize June 10, 2025, as FSGS Awareness Day.