Us Congress Senate Bill SR84

Us Congress 2023-2024 Regular Session

• Introduced: 2/28/23

Caption

A resolution designating February 28, 2023, as "Rare Disease Day".

Impact

The designation of Rare Disease Day is significant as it aligns with broader efforts by health authorities, including the FDA and the National Institutes of Health, to promote awareness and innovation in the treatment and care of rare diseases. This recognition further acknowledges the growing number of individuals—over 25 million in the U.S.—who are impacted by more than 7,000 known rare diseases, including severe and life-threatening conditions. The day serves as a platform to advocate for improved healthcare policies and research funding dedicated to rare diseases.

Summary

SR84 is a resolution designating February 28, 2023, as 'Rare Disease Day' in the United States Senate. This recognition aims to raise awareness about the significant challenges faced by individuals living with rare diseases and disorders, which affect a small number of people—under 200,000 individuals per disease. The resolution emphasizes the importance of improving accurate diagnosis, facilitating access to care, and fostering ongoing research and support for individuals with these health conditions.

Contention

While the resolution itself may not present contentious legislative debate, the context in which it operates reveals underlying issues regarding funding and research for rare diseases. There are ongoing discussions about improving treatment options, where about 90% of rare diseases currently lack approved treatments. The resolution highlights the historical significance of the Orphan Drug Act, which has allowed for advances in research and treatment; however, it also calls for continued efforts to bridge the gaps in care and support for these patients.