PRINTER'S NO. 756
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No.
135
Session of
2019
INTRODUCED BY J. WARD AND BLAKE, MAY 8, 2019
INTRODUCED AND ADOPTED, MAY 8, 2019
A RESOLUTION
Designating May 7, 2019, as "Rare Disease Day" in Pennsylvania.
WHEREAS, There are approximately 1.2 million Pennsylvanians
who suffer from rare diseases, and there are approximately 7,000
rare diseases afflicting nearly 30 million people in the United
States; and
WHEREAS, Children with rare genetic diseases account for more
than half of the population affected by rare diseases in the
United States; and
WHEREAS, Many rare diseases are serious and life-threatening
and lack an effective treatment; and
WHEREAS, Rare diseases include epidermolysis bullosa,
progeria, sickle cell anemia, Tay-Sachs, cystic fibrosis, many
childhood cancers and fibrodysplasia ossificans progressiva; and
WHEREAS, Individuals with rare diseases experience challenges
that include difficulty in obtaining an accurate diagnosis,
limited treatment options and difficulty finding physicians or
treatment centers with expertise in their disease; and
WHEREAS, Great strides have been made in research and
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treatment for rare diseases as a result of the Orphan Drug Act;
and
WHEREAS, The United States Food and Drug Administration and
the National Institutes of Health have established special
offices to advocate for rare disease research and treatments;
and
WHEREAS, The National Organization for Rare Disorders is an
organization established in 1983 to provide services to patients
with rare diseases and advocate on behalf of patients with rare
diseases; and
WHEREAS, The National Organization for Rare Disorders was a
primary force behind the enactment of the Orphan Drug Act and
remains a critical public voice for people with rare diseases;
and
WHEREAS, The National Organization for Rare Disorders
sponsors "Rare Disease Day" in the United States to increase
public awareness of rare diseases; and
WHEREAS, "Rare Disease Day" has become a global event
occurring annually on the last day of February; therefore be it
RESOLVED, That the Senate designate May 7, 2019, as "Rare
Disease Day" in Pennsylvania; and be it further
RESOLVED, That the Senate join millions of people around the
world in observing "Rare Disease Day" and finding ways to work
together to provide the different kinds of care that people
living with a rare disease need.
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