Pennsylvania SR 158: A Resolution honoring the life and achievements of Andrew Wyeth, one of America's best-known 20th century artists.
Status: Transmitted as directed (as of 2017-07-05)
State: Pennsylvania · Session: 2017-2018 · Bill: SR 158
Sponsors: Killion
Bill Text
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 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 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 20260SR0158PN1486 - 2 - 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 together to provide the different kinds of care that people living with a rare disease need. 20260SR0158PN1486 - 3 - 1 2
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