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SCR-109 Rare Disease Day.(2017-2018)

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SCR109:v99#DOCUMENT


CALIFORNIA LEGISLATURE— 2017–2018 REGULAR SESSION

Senate Concurrent Resolution No. 109


Introduced by Senator Pan
(Coauthor: Assembly Member Bonta)

February 27, 2018


Relative to Rare Disease Day.


LEGISLATIVE COUNSEL'S DIGEST


SCR 109, as introduced, Pan. Rare Disease Day.
This measure would proclaim February 28, 2018, as Rare Disease Day in California and commend patients, families, and patient advocacy groups, as well as researchers who tirelessly work to find treatments and cures for rare diseases.
Fiscal Committee: NO  

WHEREAS, The first “World Rare Disease Day” was observed on February 28, 2008, in both Canada and Europe; and
WHEREAS, The United States, in association with the Natural Organization of Rare Diseases, joined in observance of “World Rare Disease Day” in February 2009; and
WHEREAS, Currently, over 100 nations throughout the world recognize the last day of February as “World Rare Disease Day” and have been joined by the Global Genes Project; and
WHEREAS, The purpose of “World Rare Disease Day” is to increase awareness of those persons afflicted with rare diseases and to increase support for much needed research into rare diseases, as well as increasing support for patients and advocacy support groups; and
WHEREAS, It is estimated that rare diseases impact nearly 10 percent of the world’s population; and
WHEREAS, Often times research conducted into rare diseases will provide much needed scientific data and findings that are helpful in developing cures and treatments for more common diseases; and
WHEREAS, The United States has recognized the importance of research into rare diseases by enacting the Orphan Drug Act; and
WHEREAS, Major research, including significant efforts in California, is currently underway for rare diseases, including, but not limited to, Angelman Syndrome, Spinal Muscular Atrophy, and PPP2R5D genetic variations; and
WHEREAS, Major social media companies domiciled in California, such as Facebook, Twitter, and Instagram, have made it possible for children, families, and researchers from around the world to communicate and coordinate important efforts aimed at combating rare diseases; now, therefore, be it
Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature hereby proclaims February 28, 2018, as Rare Disease Day in California and commends patients, families, and patient advocacy groups, as well as researchers who tirelessly work to find treatments and cures for rare diseases; and be it further
Resolved, That the Secretary of Senate transmit copies of this resolution to the author for appropriate distribution.