Bill Text: CA SCR108 | 2015-2016 | Regular Session | Chaptered
Bill Title: Rare Disease Day.
Spectrum: Slight Partisan Bill (Democrat 58-30-1)
Status: (Passed) 2016-05-04 - Chaptered by Secretary of State. Res. Chapter 30, Statutes of 2016. [SCR108 Detail]
Download: California-2015-SCR108-Chaptered.html
BILL NUMBER: SCR 108 CHAPTERED
BILL TEXT
RESOLUTION CHAPTER 30
FILED WITH SECRETARY OF STATE MAY 4, 2016
ADOPTED IN SENATE APRIL 28, 2016
ADOPTED IN ASSEMBLY APRIL 25, 2016
AMENDED IN ASSEMBLY APRIL 25, 2016
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, Waldron, Achadjian,
Alejo, Travis Allen, Arambula, Atkins, Bigelow, Bloom, Bonilla,
Bonta, Brough, Brown, Burke, Calderon, Campos, Chau, Chávez, Chiu,
Chu, Cooley, Cooper, Dababneh, Dahle, Daly, Eggman, Frazier, Beth
Gaines, Eduardo Garcia, Gatto, Gipson, Gomez, Gonzalez, Gordon, Gray,
Grove, Hadley, Harper, Roger Hernández, Holden, Irwin, Jones,
Jones-Sawyer, Linder, Lopez, Low, Maienschein, Mathis, Mayes,
McCarty, Medina, Melendez, Mullin, Nazarian, Obernolte, O'Donnell,
Patterson, Quirk, Rendon, Ridley-Thomas, Rodriguez, Salas, Santiago,
Steinorth, Mark Stone, Thurmond, Ting, Weber, Wilk, and Wood)
FEBRUARY 12, 2016
Relative to Rare Disease Day.
LEGISLATIVE COUNSEL'S DIGEST
SCR 108, 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.
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 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.
