PENNSYLVANIA, March 6 - 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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