California Assembly Bill AR91

California 2021-2022 Regular Session

• Introduced: 2/23/22
• Refer: 2/24/22
• Passed: 3/3/22

Caption

Relative to Rare Disease Day.

Impact

The bill aims to promote awareness of rare diseases and the challenges faced by those affected, such as delays in diagnosis, difficulties in accessing medical expertise, and a lack of available treatments. While the bill does not enact new laws or regulations, its passage serves to elevate the conversation around rare diseases and may inspire further research and support initiatives within the healthcare community. By designating a specific day for awareness, the resolution encourages community engagement and participation in discussions regarding rare diseases.

Summary

House Resolution No. 91, introduced by Assembly Member Maienschein, aims to officially proclaim February 28, 2022, as Rare Disease Day in California. This resolution recognizes the significant number of individuals affected by rare diseases across the state and acknowledges the broader implications these conditions have on public health. With nearly 7,000 different rare diseases recognized, the resolution highlights that collectively these conditions impact approximately 30 million Americans, warranting public attention and awareness.

Contention

While there may not be significant opposition to the resolution itself, discussions surrounding rare diseases often involve broader implications related to healthcare access and funding for research. Supporter concerns regarding the necessity of raising awareness for less known conditions may contrast with arguments focusing on resource allocation and prioritization within public health. Nonetheless, the resolution's passage with unanimous support indicates a strong bipartisan recognition of the importance of addressing health disparities faced by patients with rare diseases.