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PA SR158
Resolution
Status
Introduced
3/6/2026
Primary Sponsor
Judith Ward
Click for details
AI Summary
- Designates February 28, 2026, as "Rare Disease Day" in Pennsylvania to increase public awareness of rare diseases
- Approximately 1.2 million Pennsylvanians and over 30 million Americans are affected by more than 10,000 rare diseases, with children accounting for more than half of those affected
- Fewer than 5% of rare diseases have an FDA-approved treatment; examples include epidermolysis bullosa, progeria, sickle cell anemia, Tay-Sachs, and cystic fibrosis
- Pennsylvania Rare Disease Advisory Council was established in 2017 through bipartisan legislation to study rare disease incidence and advise the General Assembly
- Urges the Senate to join global observance of Rare Disease Day and work toward providing care for people living with rare diseases
Legislative Description
Recognizing February 28, 2026, as "Rare Disease Day" in Pennsylvania.
Last Action
Referred to Rules & Executive Nominations
3/6/2026
Committee Referrals
Rules & Executive Nominations3/6/2026
Full Bill Text
No bill text available