PRINTER'S NO. 1599
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No.
295
Session of
2015
INTRODUCED BY COSTA, MARCH 14, 2016
INTRODUCED AND ADOPTED, MARCH 14, 2016
A RESOLUTION
Recognizing February 29, 2016, 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 small
numbers of people, rare diseases as a group affect almost 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, While more than 450 drugs and biologics have been
approved for the treatment of rare diseases, according to the
Federal Food and Drug Administration, millions of Americans
still 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, While some rare diseases, such as Amyotrophic
Lateral Sclerosis, commonly known as Lou Gehrig's disease, are
relatively well known, many others are not known at all by the
public, which leaves 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 one in ten Americans have
rare diseases; and
WHEREAS, The National Organization for Rare Disorders
organized a nationwide observance of "Rare Disease Day" on
February 29, 2016; and
WHEREAS, Thousands of patients, caregivers, medical
professionals, researchers, government officials, companies
developing treatments for rare diseases and others participated
in the observance; therefore be it
RESOLVED, That the Senate recognize February 29, 2016, as
"Rare Disease Day" in Pennsylvania.
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