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.

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 worlds 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.

 THIRD READING 

Bill No: SCR 109

Author: Pan (D), et al.

Introduced: 2/27/18

Vote: 21

SUBJECT: Rare Disease Day

SOURCE: Jordan’s Guardian Angels

DIGEST:

This resolution 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.

ANALYSIS: This resolution makes the following legislative findings:

1. The first “World Rare Disease Day” was observed on February 28, 2008, in both Canada and Europe.
2. The United States, in association with the Natural Organization of Rare Diseases, joined in observance of “World Rare Disease Day” in February 2009.
3. 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.
4. It is estimated that rare diseases impact nearly 10 percent of the world’s population.
5. 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.

This resolution 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.

Related/Prior Legislation

ACR 162 (Levine, 2018) proclaims February 28, 2018, as Rare Disease Day in California.

FISCAL EFFECT: Appropriation: No Fiscal Com.: No Local: No

SUPPORT: (Verified 3/7/18)

Jordan’s Guardian Angels (source)

Bayer

OPPOSITION: (Verified 3/7/18)

None received

ARGUMENTS IN SUPPORT: Bayer writes, “As a result of this lack of awareness, those with rare diseases the often experience problems associated with diagnosis, access to specialists, and limited treatment options. Although advancements in drug development have done much to improve the lives of those living with rare diseases, there is much more work to be done, as millions of Americans are still waiting for new treatments and cures. By recognizing the last day of February as Rare Disease Day in California, the Legislature will send a powerful message that these patients have not been forgotten and will encourage those who have dedicated their lives to discovering new treatments to continue their efforts.”

Prepared by: Karen Chow / SFA / (916) 651-1520

3/9/18 10:43:10

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