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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