Bill > H8079

This resolution recognizes February 28, 2025, as "Rare Disease Day" in Florida, highlighting the significant challenges faced by individuals with rare diseases. The resolution provides context by noting that the National Institutes of Health identifies nearly 7,000 rare diseases affecting fewer than 200,000 Americans, with approximately 30 million Americans impacted, half of whom are children. It emphasizes the serious nature of these conditions, pointing out that while the Food and Drug Administration has approved drugs for over 1,000 rare disease indications, many Americans still lack approved treatments. The resolution also acknowledges the difficulties patients and families encounter, such as delayed diagnoses, challenges in finding medical experts, and limited access to treatments. Additionally, it recognizes that nearly 1 in 10 Americans has a rare disease, and highlights Florida's establishment of the Rare Disease Advisory Council in 2021 and the Orphan Drug Act, which has encouraged the development of treatments for rare diseases.

https://www.flsenate.gov/Session/Bill/2025/8079