Wisconsin Senate Bill SJR102

Wisconsin 2023-2024 Regular Session

• Introduced: 1/26/24
• Refer: 1/26/24
• Failed: 4/15/24

Caption

Observing February 29, 2024, as Rare Disease Day in Wisconsin.

Impact

The resolution seeks to raise public awareness about rare diseases and the need for continued support for research and treatment advancements. By officially designating Rare Disease Day, the state aims to encourage discussions regarding the healthcare challenges faced by patients and their families. The resolution's endorsement by several Senators and Representatives signals a strong legislative commitment to enhancing understanding and support for those affected by rare diseases.

Summary

Senate Joint Resolution 102 (SJR102) was introduced to observe February 29, 2024, as Rare Disease Day in Wisconsin. The resolution highlights the importance of recognizing the challenges faced by individuals with rare diseases, which collectively affect a significant population despite each disease individually impacting fewer than 200,000 Americans. The bill outlines the various difficulties faced by patients, including delays in diagnosis, challenges in accessing expert medical care, and limited availability of treatments despite over 800 approved options for rare diseases.

Contention

While the resolution primarily serves as a symbolic acknowledgment, its significance lies in fostering a community-focused approach toward rare diseases. Discussions around such observances can sometimes prompt debate about resource allocation for rare disease research and the effectiveness of existing policies aimed at improving healthcare accessibility for these patients. As this resolution gains bipartisan support, it demonstrates a proactive step in legislative advocacy for lesser-known medical conditions.