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PRINTER'S NO. 308
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No.
29
Session of
2017
INTRODUCED BY COSTA, FEBRUARY 8, 2017
INTRODUCED AND ADOPTED, FEBRUARY 8, 2017
A RESOLUTION
Recognizing February 28, 2017, as "Rare Disease Day" in
Pennsylvania.
WHEREAS, According to the National Institutes of Health,
there are approximately 7,000 diseases and conditions considered
rare, each affecting fewer than 200,000 Americans, in the United
States; and
WHEREAS, While each of these diseases may affect a small
number of people, rare diseases as a group affect approximately
30 million Americans; and
WHEREAS, Many rare diseases are serious and debilitating
conditions that have a significant impact on the lives of those
affected; and
WHEREAS, According to the United States Food and Drug
Administration, more than 450 drugs and biologics have been
approved for the treatment of rare diseases; and
WHEREAS, Millions of Americans have rare diseases for which
there is no approved treatment; and
WHEREAS, Individuals and families affected by rare diseases
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often experience problems such as diagnosis delay, difficulty
finding a medical expert and lack of access to treatments or
ancillary services; and
WHEREAS, Some rare diseases, such as amyotrophic lateral
sclerosis, commonly referred to as Lou Gehrig's disease, are
relatively well known; and
WHEREAS, Other rare diseases are not publicly known, leaving
patients and their families to bear a large share of the burden
of funding research and raising public awareness to support the
search for treatments; and
WHEREAS, Thousands of Pennsylvanians are among those affected
by rare diseases since approximately 1 in 10 Americans have rare
diseases; and
WHEREAS, The National Organization for Rare Disorders has
organized a nationwide observance of "Rare Disease Day" on
February 28, 2017; and
WHEREAS, Thousands of patients, caregivers, medical
professionals, researchers, government officials, companies
developing treatments for rare diseases and others are
participating in the observance; therefore be it
RESOLVED, That the Senate recognize February 28, 2017, as
"Rare Disease Day" in Pennsylvania.
20170SR0029PN0308 - 2 -
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