Bill Text: CA AR6 | 2015-2016 | Regular Session | Amended

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Bill Title: Relative to Rare Disease Day.

Spectrum: Slight Partisan Bill (Democrat 50-21-1)

Status: (Introduced - Dead) 2015-03-02 - Read. Amended. Adopted. (Page 457.). [AR6 Detail]

Download: California-2015-AR6-Amended.html

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BILL NUMBER: HR 6	AMENDED
	BILL TEXT

	AMENDED IN ASSEMBLY  MARCH 2, 2015

INTRODUCED BY   Assembly Member Achadjian
   (  Coauthor:   Assembly Member 
 Mullin   Coauthors:   Assembly Members
  Mullin,   Alejo,   Travis Allen, 
 Atkins,   Baker,  Bigelow,   Bloom,
  Bonilla,   Bonta,   Brown,  
Burke,   Calderon,   Campos,   Chau, 
 Chávez,   Chiu,   Chu,   Cooper,
  Dababneh,   Dahle,   Daly,  
Dodd,   Eggman,   Frazier,   Beth Gaines,
  Gallagher,   Cristina Garcia,   Gatto,
  Gipson,   Gomez,   Gonzalez,  
Gordon,   Gray,   Grove,   Harper, 
 Roger Hernández,   Holden,   Irwin,  
Jones,   Jones-Sawyer,   Kim,   Lackey,
  Levine,   Linder,   Lopez,  
Low,   Maienschein,   Mathis,   Mayes,
  McCarty,   Medina,   Melendez, 
 Nazarian,   Obernolte,   O'Donnell,  
Patterson,   Perea,  Quirk,   Rendon,
  Ridley-Thomas,   Rodriguez,   Salas,
  Santiago,   Steinorth,   Mark Stone,
  Ting,   Wagner,   Waldron,  
Weber,   Williams,   and Wood )

                        FEBRUARY 2, 2015

   Relative to Rare Disease Day.


	LEGISLATIVE COUNSEL'S DIGEST
             HOUSE OR SENATE RESOLUTIONS DO NOT CONTAIN A DIGEST



   WHEREAS, There are nearly 7,000 diseases and conditions that are
considered rare, each affecting fewer than 200,000 Americans; and
   WHEREAS, Of these 7,000 rare diseases, more than 80 percent are
considered ultra rare, affecting less than a few thousand 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 more than 400 orphan drugs and biologicals have
been approved for the treatment of rare diseases affecting up to 14
million people, according to the United States Food and Drug
Administration, millions of Americans affected by rare diseases have
no treatment specific to their disease; and
   WHEREAS, Besides dealing with their specific medical problems,
individuals and their families affected by these rare diseases
struggle with obtaining accurate and timely diagnosis, few treatment
options, and accessing or being reimbursed for treatment; and
   WHEREAS, 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 of fundraising and
research; and
   WHEREAS, Nearly one in 10 Americans has a rare disease, and a
large number of Californians are among those affected by those
diseases; and
   WHEREAS, Research into rare diseases and development of therapies
builds greater understanding of the nature of disease and serves as a
foundation for innovation in the United States; and
   WHEREAS, A nationwide observance of Rare Disease Day will take
place on February 28, 2015, when 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, That the
Assembly proclaims February 28, 2015, 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.