Amended in Assembly April 12, 2016

Senate Concurrent Resolution No. 108

Introduced by Senator Monning

(Principal coauthor: Assembly Member Achadjian)

(Coauthors: Senators Anderson, begin insert Bates, end insert Fuller, Glazer, Hall, Hertzberg, Leno, begin insert Runner, end insert Vidak, and Wieckowski)

(Coauthors: Assembly Members begin insert Baker, end insert Chang, Dodd, Gallagher, begin insert Cristina  end insert begin insert Garcia, end insert Kim, Lackey, Levine, begin insert Wagner, end insert and Waldron)

February 12, 2016

Senate Concurrent Resolution No. 108—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 begin insert would end insert 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 begin insert a end insert small
begin delete numbers end delete begin insert number end insert 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.