BILL ANALYSIS �
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|SENATE RULES COMMITTEE | ACR 109|
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THIRD READING
Bill No: ACR 109
Author: Pan (D), et al.
Amended: 2/27/12 in Assembly
Vote: 21
ASSEMBLY FLOOR : Read and adopted, 2/27/12
SUBJECT : Rare Disease Day
SOURCE : Bay Bio
DIGEST : This resolution proclaims February 29, 2012, as
Rare Disease Day in California.
ANALYSIS : This resolution makes the following
legislative findings:
1. There are nearly 7,000 diseases and conditions
considered rare, each affecting fewer than 200,000
Americans.
2. Of these 7,000 rare diseases, more than 80 percent of
them are considered ultra rare, affecting less than a
few thousand Americans.
3. While each of these diseases may affect small numbers
of people, rare diseases as a group affect almost 30
million Americans.
4. Many rare diseases are serious and debilitating
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conditions that have a significant impact on the lives
of those affected.
5. While approximately 360 orphan drugs and biologics
have been approved for the treatment of rare diseases
affecting between 11 and 14 million people according to
the United States Food and Drug Administration, that
leaves well over 15 million Americans affected by rare
diseases with no treatment specific to their disease.
6. Besides dealing with their specific medical problems,
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.
7. While some rare diseases are relatively well known,
many others are not known at all by the public, making
patients and their families bear a large share of the
burden for fundraising and research.
8. Because nearly one in 10 Americans have a rare
disease, Californians are among those affected by those
diseases.
9. Research into rare diseases builds greater
understanding of the nature of disease and serves as a
foundation for innovation in the United States.
10. The National Organization for Rare Disorders is
organizing a nationwide observance of Rare Disease Day
on February 29, 2012, on which patients, medical
professionals, researchers, government officials, and
companies developing treatments for rare diseases will
join together to focus attention on rare diseases as a
public health issue.
11. The theme for Rare Disease Day is solidarity,
reaffirming the idea that people affected by rare
diseases are "Rare But Strong Together."
This resolution proclaims February 29, 2012, as Rare
Disease Day in California.
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FISCAL EFFECT : Fiscal Com.: No
SUPPORT : (Verified 5/23/12)
Bay Bio (source)
California ALS Advocacy Committee
CTW:nl 5/23/12 Senate Floor Analyses
SUPPORT/OPPOSITION: SEE ABOVE
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