| 1 | 1 | | CALIFORNIA LEGISLATURE 20172018 REGULAR SESSION Senate Concurrent Resolution No. 109Introduced by Senator Pan(Coauthor: Assembly Member Bonta)February 27, 2018 Relative to Rare Disease Day. LEGISLATIVE COUNSEL'S DIGESTSCR 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.Digest Key Fiscal Committee: NO Bill TextWHEREAS, The first World Rare Disease Day was observed on February 28, 2008, in both Canada and Europe; andWHEREAS, The United States, in association with the Natural Organization of Rare Diseases, joined in observance of World Rare Disease Day in February 2009; andWHEREAS, 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; andWHEREAS, 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; andWHEREAS, It is estimated that rare diseases impact nearly 10 percent of the worlds population; andWHEREAS, 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; andWHEREAS, The United States has recognized the importance of research into rare diseases by enacting the Orphan Drug Act; andWHEREAS, 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; andWHEREAS, 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 itResolved 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 furtherResolved, That the Secretary of Senate transmit copies of this resolution to the author for appropriate distribution. |
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| 3 | 3 | | CALIFORNIA LEGISLATURE 20172018 REGULAR SESSION Senate Concurrent Resolution No. 109Introduced by Senator Pan(Coauthor: Assembly Member Bonta)February 27, 2018 Relative to Rare Disease Day. LEGISLATIVE COUNSEL'S DIGESTSCR 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.Digest Key Fiscal Committee: NO |
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| 9 | 9 | | CALIFORNIA LEGISLATURE 20172018 REGULAR SESSION |
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| 11 | 11 | | Senate Concurrent Resolution No. 109 |
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| 12 | 12 | | |
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| 13 | 13 | | Introduced by Senator Pan(Coauthor: Assembly Member Bonta)February 27, 2018 |
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| 15 | 15 | | Introduced by Senator Pan(Coauthor: Assembly Member Bonta) |
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| 16 | 16 | | February 27, 2018 |
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| 17 | 17 | | |
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| 18 | 18 | | Relative to Rare Disease Day. |
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| 20 | 20 | | LEGISLATIVE COUNSEL'S DIGEST |
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| 22 | 22 | | ## LEGISLATIVE COUNSEL'S DIGEST |
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| 23 | 23 | | |
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| 24 | 24 | | SCR 109, as introduced, Pan. Rare Disease Day. |
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| 25 | 25 | | |
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| 26 | 26 | | 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. |
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| 28 | 28 | | 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. |
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| 29 | 29 | | |
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| 30 | 30 | | ## Digest Key |
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| 31 | 31 | | |
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| 32 | 32 | | ## Bill Text |
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| 34 | 34 | | WHEREAS, The first World Rare Disease Day was observed on February 28, 2008, in both Canada and Europe; and |
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| 35 | 35 | | |
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| 36 | 36 | | 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 |
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| 37 | 37 | | |
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| 38 | 38 | | 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 |
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| 39 | 39 | | |
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| 40 | 40 | | 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 |
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| 41 | 41 | | |
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| 42 | 42 | | WHEREAS, It is estimated that rare diseases impact nearly 10 percent of the worlds population; and |
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| 43 | 43 | | |
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| 44 | 44 | | 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 |
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| 45 | 45 | | |
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| 46 | 46 | | WHEREAS, The United States has recognized the importance of research into rare diseases by enacting the Orphan Drug Act; and |
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| 47 | 47 | | |
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| 48 | 48 | | 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 |
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| 49 | 49 | | |
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| 50 | 50 | | 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 |
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| 51 | 51 | | |
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| 52 | 52 | | 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 |
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| 54 | 54 | | Resolved, That the Secretary of Senate transmit copies of this resolution to the author for appropriate distribution. |
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