IV 
118TH CONGRESS 
2D SESSION 
H. RES. 1036 
Expressing support for the designation of February 29, 2024, as ‘‘Rare 
Disease Day’’. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 29, 2024 
Mr. CARSON (for himself, Mr. BACON, Ms. BARRAGA´N, Mrs. BEATTY, Ms. 
CARAVEO, Mr. DAVIS
of North Carolina, Mr. FITZPATRICK, Mr. 
GALLEGO, Mrs. GONZA´LEZ-COLO´N, Mr. HUDSON, Ms. JACKSON LEE, 
Ms. KAMLAGER-DOVE, Mr. KEAN of New Jersey, Ms. LEE of California, 
Mr. MCGOVERN, Mr. MULLIN, Ms. NORTON, Ms. PORTER, Ms. SEWELL, 
Ms. STANSBURY, Mr. SWALWELL, Ms. TLAIB, Ms. TOKUDA, and Mr. 
TRONE) submitted the following resolution; which was referred to the 
Committee on Energy and Commerce 
RESOLUTION 
Expressing support for the designation of February 29, 
2024, as ‘‘Rare Disease Day’’. 
Whereas a rare disease or disorder is a disease or disorder 
that affects a small number of patients; 
Whereas, in the United States, a rare disease or disorder af-
fects fewer than 200,000 individuals; 
Whereas, as of the date of the adoption of this resolution, 
more than 25,000,000 individuals in the United States 
are living with at least 1 of the more than 7,000 known 
rare diseases or disorders; 
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•HRES 1036 IH 
Whereas children with rare diseases or disorders account for 
a significant portion of the population affected by rare 
diseases or disorders in the United States; 
Whereas many rare diseases and disorders are serious and 
life-threatening; 
Whereas this year marks the 41st anniversary of the enact-
ment of the Orphan Drug Act (Public Law 97–414; 96 
Stat. 2049), a landmark law enabling tremendous ad-
vances in the research and treatment of rare diseases and 
disorders; 
Whereas, in 2022, the Center for Drug Evaluation and Re-
search, in the Food and Drug Administration (referred to 
in this preamble as ‘‘FDA’’), established the Accelerating 
Rare disease Cures Program with a vision of speeding 
and increasing the development of effective and safe 
treatment options to address the unmet needs of patients 
with rare diseases; 
Whereas the 117th Congress passed into law as part of the 
Consolidated Appropriations Act, 2023 (Public Law 117– 
328; 136 Stat. 4459), provisions creating the rare disease 
endpoint advancement pilot program in the FDA to sup-
port the development of novel efficacy endpoints to help 
facilitate the development and timely approval of rare 
disease treatments; 
Whereas, although the FDA has approved more than 1,100 
orphan indications for drugs and biological products for 
the treatment of rare diseases and disorders, more than 
90 percent of rare diseases do not have a treatment ap-
proved by the FDA for their condition; 
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•HRES 1036 IH 
Whereas limited treatment options and financing life-altering 
and lifesaving treatments can be challenging for individ-
uals with rare diseases or disorders and their families; 
Whereas rare diseases and disorders include sickle cell ane-
mia, spinal muscular atrophy, amyotrophic lateral scle-
rosis, thyroid eye disease, myotonic dystrophy, t-cell 
prolymphocytic leukemia, Sanfilippo syndrome, microtia, 
meatal atresia, and conductive deafness; 
Whereas individuals with rare diseases or disorders can expe-
rience difficulty in obtaining accurate diagnoses and find-
ing physicians or treatment centers with expertise in 
their rare disease or disorder; 
Whereas the 116th Congress passed the Medicaid Services 
Investment and Accountability Act of 2019 (Public Law 
116–16; 133 Stat. 852), which included provisions for 
improving access to coordinated, patient-centered health 
care for children with complex and rare medical condi-
tions in Medicaid, and became effective October 1, 2022; 
Whereas the FDA and the National Institutes of Health sup-
port innovative research on the treatment of rare diseases 
and disorders; 
Whereas Rare Disease Day is observed each year on the last 
day of February; 
Whereas Rare Disease Day is a global event that was first 
observed in the United States on February 28, 2009, and 
was observed in more than 100 countries in 2022; and 
Whereas Rare Disease Day is expected to be observed glob-
ally for years to come, providing hope and information 
for rare disease and disorder patients around the world: 
Now, therefore, be it 
Resolved, That the House of Representatives— 
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•HRES 1036 IH 
(1) expresses support for the designation of 
‘‘Rare Disease Day’’; and 
(2) recognizes the importance of, with respect 
to rare diseases and disorders— 
(A) improving awareness; 
(B) encouraging accurate and early diag-
nosis; and 
(C) supporting national and global efforts 
to develop effective treatments, diagnostics, and 
cures. 
Æ 
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