IV 
119TH CONGRESS 
1ST SESSION 
H. RES. 507 
Expressing support for the designation of June 10 as ‘‘FSGS Awareness 
Day’’. 
IN THE HOUSE OF REPRESENTATIVES 
JUNE 12, 2025 
Mr. BILIRAKIS submitted the following resolution; which was referred to the 
Committee on Energy and Commerce 
RESOLUTION 
Expressing support for the designation of June 10 as ‘‘FSGS 
Awareness Day’’. 
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); 
Whereas focal segmental glomerulosclerosis is a condition re-
ferring to the scarring in the kidneys, often leading to a 
difficult journey that can in many cases result in kidney 
failure, requiring dialysis, transplant, and often cycles of 
remissions and relapse; 
Whereas 50 percent of patients with FSGS require dialysis 
or a kidney transplant within 5–10 years of their diag-
nosis; 
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Whereas FSGS is a severe disease because it often progresses 
rapidly to kidney failure and even for patients with pri-
mary FSGS who receive a kidney transplant; 
Whereas FSGS can recur in their transplanted kidney up to 
50 percent of the time; 
Whereas 
FSGS 
recurrence 
can 
happen 
quickly 
posttransplant, sometimes hours to days, and increases 
the recurrence risk in a future graft to 80 to 100 per-
cent; 
Whereas FSGS is a burden on our health care system, with 
a 2019 study estimating that FSGS costs Medicaid, 
Medicare, 
and 
private 
health 
insurance 
about 
$2,000,000,000 annually in direct medical costs, not in-
cluding indirect and quality of life costs; 
Whereas, according to the RaDaR Database, rare kidney dis-
eases like FSGS make up just 5 to 10 percent of chronic 
kidney disease patients but account for approximately 30 
percent of kidney failure; 
Whereas many patients face delays in being diagnosed with 
FSGS, due both to the difficulty of the rare disease diag-
nostic odyssey, which averages 5 to 7 years, and chal-
lenges in accessing nephrology care that specializes in 
rare kidney diseases, of which there is currently a short-
age in the United States; 
Whereas FSGS disproportionately impacts minority popu-
lations, including African Americans, often occurring at 
a rate 4 to 5 times higher than White Americans; 
Whereas, because of certain variants of the APOL1 gene that 
significantly increase the risk of developing FSGS and 
other kidney diseases, and because these high-risk 
variants are found almost exclusively in individuals of Af-
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•HRES 507 IH 
rican ancestry, FSGS contributes to the disproportionate 
burden of kidney disease in Black communities; 
Whereas there is new hope for patients with FSGS, with clin-
ical trials underway for products that may delay progres-
sion of FSGS and the onset of kidney disease, including 
the potential for FDA approved therapies in the near fu-
ture, and significant progress being made by scientists, 
regulators, patient groups, and industry to validate pro-
teinuria as an indicator of improvement in patients; 
Whereas patients, families, advocacy organizations like 
NephCure, health care providers, industry, and research-
ers are working tirelessly to raise awareness, promote 
early detection, and develop new innovative therapies for 
FSGS; 
Whereas millions of dollars have been raised for research on 
the severe rare kidney disease FSGS at the Tampa Pig 
Jig, an event started in 2011 when 3 friends wanted to 
raise money for a friend diagnosed with the rare kidney 
disease FSGS and is now attended by about 10,000 peo-
ple annually in pursuit of a cure for this devastating dis-
ease; and 
Whereas ‘‘FSGS Awareness Day’’ is designated to raise 
awareness of FSGS, provide support and inspiration to 
patients and families struggling with the disease, and to 
promote the efforts needed for better diagnosis and ac-
cess to future treatments that can transform the course 
of the disease: Now, therefore, be it 
Resolved, That the House of Representatives— 
(1) expresses support for the designation of 
‘‘FSGS Awareness Day’’; 
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(2) applauds the efforts of advocates and orga-
nizations that encourage awareness, promote re-
search, and provide education, support, and hope to 
those impacted by FSGS, including those suffering 
from recurrent FSGS; and 
(3) recognizes the commitment of parents, fam-
ilies, researchers, health professionals, industry, and 
others dedicated to finding an effective treatment 
and eventual cure for FSGS. 
Æ 
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