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PRINTER'S NO. 1486
THE GENERAL ASSEMBLY OF PENNSYLVANIA
SENATE RESOLUTION
No. 158
Session of
2026
INTRODUCED BY J. WARD, COLLETT, HUGHES, LAUGHLIN, BROOKS,
PHILLIPS-HILL, HAYWOOD, CULVER, MARTIN, SANTARSIERO, VOGEL,
STEFANO AND HUTCHINSON, MARCH 6, 2026
REFERRED TO RULES AND EXECUTIVE NOMINATIONS, MARCH 6, 2026
A RESOLUTION
Recognizing February 28, 2026, as "Rare Disease Day" in
Pennsylvania.
WHEREAS, There are approximately 1.2 million Pennsylvanians
who suffer from rare diseases, and there are more than 10,000
rare diseases afflicting more than 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
with fewer than 5% having an FDA-approved 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
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treatment centers with expertise in their disease; and
WHEREAS, Great strides have been made in research and
treatment for rare diseases as a result of Congress passing 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 Pennsylvania Rare Disease Advisory Council was
established in 2017 through bipartisan legislation to study
incidence and status of rare diseases in this Commonwealth and
serve as an advisory body to the General Assembly and State
agencies; 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 recognize February 28, 2026, 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
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together to provide the different kinds of care that people
living with a rare disease need.
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