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.
20160SR0295PN1599 - 2 -
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