THIRD READING

Bill No: ACR 14

Author: Nazarian (D), et al.

Introduced: 1/23/17

Vote: 21

ASSEMBLY FLOOR: Read and adopted, 2/27/17

SUBJECT: Rare Disease Day

SOURCE: Author

DIGEST:

This resolution proclaims February 28, 2017, as Rare Disease Day in California and provides for the recognition of Rare Disease Day in California in subsequent years, as specified.

ANALYSIS: This resolution makes the following legislative findings:

Every year on the last day of February a nationwide observance of rare diseases is organized with patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases.
There are nearly 7,000 diseases and conditions that are considered rare, each affecting fewer than 200,000 Americans, according to the National Institute of Health.
While each of these diseases may affect a small number of people, rare diseases as a group affect almost 30 million Americans and many rare diseases are serious and debilitating conditions that have a significant impact on the lives of those affected.
More than 450 drugs and biologics have been approved for the treatment of rare diseases, according to the U.S. Food and Drug Administration; millions of Americans still have rare diseases for which there is no approved treatment.
Residents of California are among those affected by rare diseases because nearly one in 10 Americans has a rare disease.
While the public is familiar with some rare diseases, many patients and families affected by less widely known rare diseases bear a large share of the burden of funding research and raising public awareness to support the search for treatments.

This resolution proclaims February 28, 2017, as Rare Disease Day in California and provides for the recognition of Rare Disease Day in California in subsequent years, as specified.

Related/Prior Legislation

SCR 108 (Monning, Resolution Chapter 30, Statutes of 2016) proclaimed February 29, 2016, as Rare Disease Day in California and provided for the recognition of Rare Disease Day in California in subsequent years, as specified.

FISCAL EFFECT: Appropriation: No Fiscal Com.: No Local: No

SUPPORT: (Verified 3/1/17)

ALS (Amyotrophic Lateral Sclerosis) Association Golden West Chapter

ALS (Amyotrophic Lateral Sclerosis) Association Greater Sacramento Chapter

ALS (Amyotrophic Lateral Sclerosis) Association Greater San Diego Chapter

California Life Sciences Association

OPPOSITION: (Verified 3/1/17)

None received

ARGUMENTS IN SUPPORT: The Chapters of the ALS Association cited above, state that this resolution “is a helpful tool in raising awareness of rare diseases like ALS in California.”

Prepared by: Melissa Ward / SFA / (916) 651-1520

3/1/17 15:22:25

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ACR 14: Rare Disease Day.

Assembly Floor

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