Bill > SR158

This resolution formally recognizes February 28, 2026, as "Rare Disease Day" in Pennsylvania, acknowledging that approximately 1.2 million Pennsylvanians are affected by rare diseases, which are often serious, life-threatening, and lack FDA-approved treatments. The resolution highlights the challenges faced by individuals with rare diseases, such as obtaining accurate diagnoses and finding specialized care, and commends efforts like the Orphan Drug Act and the work of organizations like the National Organization for Rare Disorders (NORD) in advancing research and advocacy. It also notes the establishment of the Pennsylvania Rare Disease Advisory Council to study and advise on rare disease issues within the Commonwealth, and encourages the Senate to join the global observance of Rare Disease Day by finding ways to support the care needs of those living with these conditions.

Government Affairs

https://www.palegis.us/legislation/bills/2025/sr158