SCR109 aims to not only recognize Rare Disease Day but also to commend the efforts of those involved in rare disease advocacy. By establishing a specific day for recognition, the resolution fosters a greater understanding of the challenges faced by individuals with rare diseases and encourages the support of research initiatives. This could have positive ramifications for funding and promoting further research, ultimately leading to improved treatment options and policies.
Senate Concurrent Resolution 109 (SCR109), introduced by Senator Pan and coauthored by Assembly Member Bonta, proclaims February 28, 2018, as Rare Disease Day in California. This resolution seeks to increase awareness about the impact of rare diseases, which affect approximately 10% of the global population. The measure highlights the importance of rare disease research and acknowledges the significant contributions of patients, families, advocacy groups, and researchers in the fight against these conditions.
While SCR109 is largely symbolic, it signifies a larger trend toward recognizing the needs of rare disease communities. Notably, the resolution also responds to the recognition of research efforts related to specific rare disorders, such as Angelman Syndrome and Spinal Muscular Atrophy. The passage of this resolution coincides with worldwide observances of Rare Disease Day and aligns California with global efforts to raise awareness and support for these often-overlooked health issues.