•HRES 952 IH 
Whereas many rare diseases and disorders are serious and 
life-threatening and lack effective treatments; 
Whereas, as a result of the enactment of the Orphan Drug 
Act (Public Law 97–414; 96 Stat. 2049), important ad-
vances have been made in the research and treatment of 
rare diseases and disorders; 
Whereas the Food and Drug Administration (FDA) has 
made strides in gathering patient perspectives to inform 
the drug review process as part of the Patient-Focused 
Drug Development program, an initiative that was re-
affirmed under the FDA Reauthorization Act of 2017 
(Public Law 115–52; 131 Stat. 1005); 
Whereas although the Food and Drug Administration has ap-
proved more than 1,000 orphan indications for drugs and 
biological products for the treatment of rare diseases and 
disorders, 95 percent of rare diseases do not have an 
FDA-approved treatment for their condition; 
Whereas limited treatment options and difficulty obtaining 
reimbursement for life-altering and lifesaving treatments 
can be challenging for individuals 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, 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; 
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•HRES 952 IH 
Whereas the 116th Congress passed a 4-year extension of the 
Rare Pediatric Disease Priority Review Voucher program 
under section 529(b) of the Federal Food, Drug, and 
Cosmetic Act (21 U.S.C. 360ff(b)) as part of the Consoli-
dated Appropriations Act, 2021 (Public Law 116–260; 
134 Stat. 1182), providing an incentive for the develop-
ment of therapies for children with rare diseases; 
Whereas the 116th Congress passed the Advancing Care for 
Exceptional Kids Act (Public Law 116–16; 133 Stat. 
852), improving access to coordinated, patient-centered 
health care for children with complex and rare medical 
conditions in Medicaid; 
Whereas the Food and Drug Administration and the National 
Institutes of Health support research on the treatment of 
rare diseases and disorders; 
Whereas 2022 marks the 39th anniversary of the enactment 
of the Orphan Drug Act (Public Law 97–414; 96 Stat. 
2049); 
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 2021; 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— 
(1) expresses support for the designation of 
‘‘Rare Disease Day’’; and 
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•HRES 952 IH 
(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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