BILL NUMBER: SCR 108	AMENDED
	BILL TEXT

	AMENDED IN ASSEMBLY  APRIL 12, 2016

INTRODUCED BY   Senator Monning
   (Principal coauthor: Assembly Member Achadjian)
   (Coauthors: Senators Anderson,  Bates,  Fuller, Glazer,
Hall, Hertzberg, Leno,  Runner, Vidak, and Wieckowski)
   (Coauthors: Assembly Members  Baker,  Chang, Dodd,
Gallagher,  Cristina Garcia,  Kim, Lackey, Levine, 
Wagner,  and Waldron)

                        FEBRUARY 12, 2016

   Relative to Rare Disease Day.


	LEGISLATIVE COUNSEL'S DIGEST


   SCR 108, as amended, Monning. Rare Disease Day.
   This measure would proclaim February 29, 2016, as Rare Disease Day
in California and  would  provide for the recognition of
Rare Disease Day in California in subsequent years, as specified.
   Fiscal committee: no.



   WHEREAS, There are nearly 7,000 diseases and conditions that are
considered rare, each affecting fewer than 200,000 Americans,
according to the National Institutes of Health; and
   WHEREAS, While each of these diseases may affect  a 
small  numbers   number  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 450 drugs and biologics have been
approved for the treatment of rare diseases, according to the United
States Food and Drug Administration, millions of Americans still have
rare diseases for which there is no approved treatment; and
   WHEREAS, Individuals and families affected by rare diseases often
experience problems such as diagnosis delay, difficulty finding a
medical expert, and lack of access to treatments or ancillary
services; and
   WHEREAS, 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; and
   WHEREAS, Residents of California are among those affected by rare
diseases because nearly one in 10 Americans have rare diseases; and
   WHEREAS, 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; and
   WHEREAS, This year's national Rare Disease Day observance will
take place on February 29, 2016; now, therefore, be it
   Resolved by the Senate of the State of California, the Assembly
thereof concurring, That the Legislature hereby proclaims February
29, 2016, as Rare Disease Day in California; and be it further
   Resolved, That every year thereafter the Legislature shall
recognize Rare Disease Day in California on the last day of February;
and be it further
   Resolved, That the Secretary of the Senate transmit copies of this
resolution to the author for appropriate distribution.