BILL ANALYSIS Ó
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Date of Hearing: April 14, 2016
ASSEMBLY COMMITTEE ON RULES
Gordon, Chair
SCR
108 (Monning) - As Amended April 12, 2016
SENATE VOTE: 40-0
SUBJECT: Rare Disease Day
SUMMARY: Proclaims February 29, 2016, as Rare Disease Day in
California and would provide for the recognition of Rare Disease
Day in California in subsequent years, as specified.
Specifically, this resolution makes the following legislative
findings:
1) There are nearly 7,000 diseases and conditions that are
considered rare; and, rare diseases as a group affect almost
30 million Americans.
2) Many rare diseases are serious and debilitating conditions
that have a significant impact on the lives of those
affected; and, individuals and their families affected by
rare diseases struggle with obtaining an accurate and timely
diagnosis, few, if any treatment options, and problems
related to accessing or being reimbursed for treatment.
3) Nearly one in 10 Americans has a rare disease, Californians
are among those affected by those diseases.
4) Every year on the last day of February a nationwide
observance of rare diseases is organized with patients,
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medical professionals, researchers, government officials, and
companies developing treatments for rare diseases.
FISCAL EFFECT: None
REGISTERED SUPPORT / OPPOSITION:
Support
Bayer
California Life Sciences Association
Opposition
None on file
Analysis Prepared by:Nicole Willis / RLS. / (916) 319-2800