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[Pages S1603-S1604]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SENATE RESOLUTION 90--DESIGNATING FEBRUARY 28, 2019, AS ``RARE DISEASE
DAY''
Mr. BROWN (for himself, Mr. Barrasso, Mr. Whitehouse, Mr. Markey, Mr.
Blumenthal, Mr. Coons, Ms. Stabenow, Mr. Booker, and Ms. Warren)
submitted the following resolution; which was considered and agreed to:
S. Res. 90
Whereas a rare disease or disorder is one that affects a
small number of patients, which, in the United States, is
considered to be a population of fewer than 200,000
individuals;
Whereas, as of the date of the adoption of this resolution,
more than 7,000 rare diseases affect as many as 30,000,000
people in the United States and their families;
Whereas children with rare diseases account for a
significant portion of the population affected by rare
diseases in the United States;
Whereas many rare diseases are serious and life-threatening
and lack effective treatments;
Whereas, as a result of the Orphan Drug Act (Public Law 97-
414; 96 Stat. 2049), there have been important advances made
in the research of, and treatment for, rare diseases;
Whereas the Food and Drug Administration has made great
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 more than 750 orphan indications for
drugs and biological products
[[Page S1604]]
have been approved by the Food and Drug Administration for
the treatment of rare diseases, millions of people in the
United States have a rare disease for which there is no
approved treatment;
Whereas lack of access to effective treatments and
difficulty in obtaining reimbursement for life-altering, and
even life-saving, treatments remain significant challenges
for people with rare diseases and their families;
Whereas rare diseases and conditions include McArdle
disease, Ehlers-Danlos syndrome, acoustic neuroma, Paget
disease, Landau-Kleffner syndrome, necrotizing fasciitis,
mucopolysaccharidosis type I, Rasmussen encephalitis,
Sanfilippo syndrome, Prader-Willi syndrome, Wagner syndrome,
Barth syndrome, and many rare cancers;
Whereas people with rare diseases experience challenges
that include--
(1) difficulty in obtaining accurate diagnoses;
(2) limited treatment options; and
(3) difficulty finding physicians or treatment centers with
expertise in the rare disease affecting the individual;
Whereas the 115/th/ 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;
Whereas both the Food and Drug Administration and the
National Institutes of Health have established special
offices to support and facilitate rare disease research and
treatments;
Whereas the National Organization for Rare Disorders
(referred to in this preamble as ``NORD''), a nonprofit
organization established in 1983 to provide services to, and
advocate on behalf of, patients with rare diseases, remains a
critical public voice for people with rare diseases;
Whereas 2019 marks the 36/th/ anniversary of the enactment
of the Orphan Drug Act (Public Law 97-414; 96 Stat. 2049) and
the establishment of NORD;
Whereas NORD sponsors Rare Disease Day in the United States
and partners with many other major rare disease organizations
to increase public awareness of rare diseases;
Whereas Rare Disease Day is observed each year on the last
day of February;
Whereas Rare Disease Day is a global event that--
(1) was first observed in the United States on February 28,
2009; and
(2) was observed in more than 90 countries in 2018; and
Whereas Rare Disease Day is expected to be observed
globally for years to come, providing hope and information
for rare disease patients around the world: Now, therefore,
be it
Resolved, That the Senate--
(1) designates February 28, 2019, as ``Rare Disease Day'';
(2) recognizes the importance of improving awareness and
encouraging accurate and early diagnosis of rare diseases and
disorders; and
(3) supports a national and global commitment to improving
access to, and developing new treatments, diagnostics, and
cures for, rare diseases and disorders.
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