BILL ANALYSIS
ACR 117
Page 1
Date of Hearing: February 18, 2010
ASSEMBLY COMMITTEE ON RULES
Ted W. Lieu, Chair
ACR 117 (Hill and Huffman) - As Amended: February 16, 2010
SUBJECT : Rare Disease Day.
SUMMARY : Proclaims February 28, 2010, as Rare Disease Day.
Specifically, this resolution makes the following legislative
findings:
1)Diseases and conditions considered rare are those affecting
fewer than 200,000 Americans each; and while each of these
diseases may affect small numbers of people, rare diseases are
serious and debilitating conditions that, as a group, affect
almost 30 million Americans.
2)Rare diseases, such as Lou Gehrig's disease and Huntington's
disease, are relatively well known; but 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.
3)The National Organization for Rare Disorders (NORD) is
organizing a nationwide observance of Rare Disease Day on
February 28, 2010, to focus attention on rare diseases as a
public health issue.
FISCAL EFFECT : None.
COMMENTS : Committee staff suggests adopting an amendment to
clarify language regarding how many Californians are affected by
rare diseases.
REGISTERED SUPPORT / OPPOSITION :
Support
California Healthcare Institute (CHI)
Children's Rare Disease Network
Kakkis EveryLife Foundation
Rare Disease Advocacy Research Education (RARE) Project
Opposition
ACR 117
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None on file.
Analysis Prepared by : Anna McCabe / RLS. / (916) 319-2800