Bill Text: CA ACR13 | 2011-2012 | Regular Session | Amended

NOTE: There are more recent revisions of this legislation. Read Latest Draft

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Bill Title: Rare Disease Day.

Spectrum: Slight Partisan Bill (Democrat 50-20)

Status: (Passed) 2011-09-28 - Chaptered by Secretary of State - Res. Chapter 101, Statutes of 2011. [ACR13 Detail]

Download: California-2011-ACR13-Amended.html

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BILL NUMBER: ACR 13	AMENDED
	BILL TEXT

	AMENDED IN ASSEMBLY  FEBRUARY 28, 2011

INTRODUCED BY   Assembly Members Huffman and Hill
    (   Coauthors:   Assembly Members 
 Achadjian,   Alejo,   Allen,  
Ammiano,   Atkins,   Beall,   Bill
Berryhill,   Block,   Blumenfield,  
Bonilla,   Brownley,   Buchanan,   Butler,
  Charles Calderon,   Carter,   Chesbro,
  Cook,   Davis,   Dickinson,  
Donnelly,   Eng,   Feuer,   Fletcher,
  Fong,   Fuentes,   Furutani,  
Galgiani,   Garrick,   Gatto,   Gordon,
  Grove,   Hagman,   Hall,  
Harkey,   Hayashi,   Roger Hernández, 
Huber,   Hueso,   Jeffries,   Jones,
  Lara,   Logue,   Bonnie Lowenthal, 
 Ma,  Mansoor,   Mendoza,   Mitchell,
  Monning,   Morrell,   Nestande, 
 Nielsen,   Olsen,   Pan,   Perea,
  John A. Pérez,   V. Manuel Pérez,  
Portantino,   Silva,   Skinner,   Smyth,
  Solorio,   Swanson,   Torres,  
Valadao,   Wagner,   Wieckowski,  
Williams,   and Yamada   ) 

                        FEBRUARY 1, 2011

   Relative to Rare Disease Day.


	LEGISLATIVE COUNSEL'S DIGEST


   ACR 13, as amended, Huffman. Rare Disease Day.
   This measure would proclaim February 28, 2011, as Rare Disease
Day.
   Fiscal committee: no.



   WHEREAS, There are nearly 7,000 diseases and conditions considered
rare (each affecting fewer than 200,000 Americans); and
   WHEREAS, While each of these diseases may affect small numbers of
people, rare diseases as a group affect almost 30 million Americans;
and
   WHEREAS, Many rare diseases are serious and debilitating
conditions that have a significant impact on the lives of those
affected; and
   WHEREAS, 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; and
   WHEREAS, Individuals and families affected by rare diseases often
experience problems such as a sense of isolation, difficulty in
obtaining an accurate and timely diagnosis, few treatment options,
and problems related to accessing or being reimbursed for treatment;
and
   WHEREAS, Some rare diseases, such as Lou Gehrig's disease and
Huntington's disease, 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; and
   WHEREAS, Because nearly one in 10 Americans have a rare disease,
Californians are among those affected by those diseases; and
   WHEREAS, The National Organization for Rare Disorders (NORD) is
organizing a nationwide observance of Rare Disease Day on February
28, 2011, 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; now, therefore, be it
   Resolved by the Assembly of the State of California, the Senate
thereof concurring, That the Legislature proclaims February 28, 2011,
as Rare Disease Day in California; and be it further
   Resolved, That the Chief Clerk of the Assembly transmit copies of
this resolution to the author for appropriate distribution.