In the near future, we plan to introduce a resolution designating February 28, 2026, as “Rare Disease Day” in Pennsylvania.

Across our Commonwealth, approximately 1.2 million residents are living with a rare disease, or 1 in 12 individuals. Among those living with a rare disease, roughly 50% are children. As Co-Chairs of the Rare Disease Caucus, this resolution marks an opportunity for a global day of recognition for individuals and families living with rare diseases. A rare disease is any disease, disorder, illness or condition affecting fewer than 200,000 people in the United States.

Recent survey findings show from more than 1,200 Pennsylvanians that nearly half have waited two or more years for a diagnosis, more than 70% were not given information about patient advocacy support, and over 80% report personal financial costs related to care.

Through bipartisan legislation in 2017, the Rare Disease Advisory Council was established to study incidence and status of rare diseases in Pennsylvania and serve as an advisory body to the General Assembly and state agencies.

Rare Disease Day is an opportunity to recognize the resilience of the rare community and to raise awareness about the unique challenges they face.

Please join us in co-sponsoring this resolution.