Formatting necessary for an accurate reading of this text may be shown by tags (e.g., <DELETED> or <BOLD>) or may be missing from this TXT display. For complete and accurate display of this text, see the PDF.
[Page S1479]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SENATE RESOLUTION 529--DESIGNATING FEBRUARY 29, 2020, AS ``RARE DISEASE
DAY''
Mr. BROWN (for himself, Mr. Barrasso, Mr. Markey, Ms. Klobuchar, Mr.
Booker, Mr. Whitehouse, Mr. Blumenthal, Mr. Wicker, and Mr. Coons)
submitted the following resolution; which was considered and agreed to:
S. Res. 529
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
typically affects fewer than 200,000 individuals;
Whereas, as of the date of the adoption of this resolution,
more than 7,000 rare diseases or disorders affect
approximately 30,000,000 individuals in the United States and
their families;
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 and lack effective treatments;
Whereas, as a result of the enactment of the Orphan Drug
Act (Public Law 97-414; 96 Stat. 2049), important advances
have been made in the research and treatment of rare diseases
and disorders;
Whereas the Food and Drug Administration 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 reaffirmed under the FDA
Reauthorization Act of 2017 (Public Law 115-52; 131 Stat.
1005);
Whereas, although the Food and Drug Administration has
approved more than 840 orphan indications for drugs and
biological products for the treatment of rare diseases and
disorders, millions of individuals in the United States have
a rare disease or disorder for which there is no approved
treatment;
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 acrodermatitis
enteropathica, medulloblastoma, Hartnup disease, mast cell
activation syndrome, Usher syndrome, osteosarcoma, Kabuki
syndrome, Fanconi anemia, Neurofibromatosis, NGLY1
deficiency, Chandler's syndrome, tularemia, and Joubert
syndrome;
Whereas individuals with rare diseases or disorders can
experience difficulty in obtaining accurate diagnoses and
finding physicians or treatment centers with expertise in
their rare disease or disorder;
Whereas the 115th Congress passed a 10-year extension of
the Children's Health Insurance Program under title XXI of
the Social Security Act (42 U.S.C. 1397aa et seq.), ensuring
health insurance coverage for many children with rare
diseases or disorders;
Whereas the Food and Drug Administration and the National
Institutes of Health support research on the treatment of
rare diseases and disorders;
Whereas 2020 marks the 37th 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, in 2020, Rare Disease Day falls on the rarest of
days, February 29;
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 2019; and
Whereas Rare Disease Day is expected to be observed
globally for years to come, providing hope and information
for rare disease and disorder patients around the world: Now,
therefore, be it
Resolved, That the Senate--
(1) designates February 29, 2020, as ``Rare Disease Day'';
and
(2) recognizes the importance of, with respect to rare
diseases and disorders--
(A) improving awareness;
(B) encouraging accurate and early diagnosis; and
(C) supporting national and global efforts to develop
effective treatments, diagnostics, and cures.
____________________
