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HR-7 (2013-2014)

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Amended  IN  Assembly  February 28, 2013


House Resolution
No. 7

Introduced by Assembly Member Levine
(Coauthors: Assembly Members Achadjian, Alejo, Allen, Ammiano, Atkins, Bigelow, Bloom, Blumenfield, Bocanegra, Bonilla, Bonta, Bradford, Brown, Buchanan, Ian Calderon, Campos, Chau, Chávez, Chesbro, Conway, Cooley, Daly, Dickinson, Donnelly, Fong, Fox, Frazier, Garcia, Gatto, Gomez, Gordon, Gorell, Gray, Grove, Hagman, Hall, Harkey, Roger Hernández, Holden, Hueso, Jones, Jones-Sawyer, Linder, Logue, Lowenthal, Maienschein, Mansoor, Medina, Melendez, Mitchell, Morrell, Mullin, Muratsuchi, Nazarian, Nestande, Olsen, Pan, Patterson, Perea, John A. Pérez, V. Manuel Pérez, Quirk, Quirk-Silva, Rendon, Salas, Stone, Ting, Torres, Waldron, Weber, Wieckowski, Wilk, Williams, and Yamada)

February 14, 2013

Relative to Rare Disease Day.


HR 7, as amended, Levine.

WHEREAS, There are nearly 7,000 diseases and conditions considered rare, each affecting fewer than 200,000 Americans; and
WHEREAS, Of these 7,000 rare diseases, more than 80 percent are considered ultra rare, affecting less than a few thousand Americans; and
WHEREAS, While each of these diseases may affect small numbers 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 350 orphan drugs and biologics have been approved for the treatment of rare diseases affecting up to 14 million people according to the United States Food and Drug Administration, millions of Americans affected by rare diseases have no treatment specific to their disease; and
WHEREAS, Besides dealing with their specific medical problems, individuals and their families affected by rare diseases struggle with obtaining an accurate and timely diagnosis, few treatment options, and accessing or being reimbursed for treatment; and
WHEREAS, While some rare diseases are relatively well known, many others are not known at all by the public, making patients and their families bear a large share of the burden for fundraising and research; and
WHEREAS, Because nearly one in 10 Americans has a rare disease, Californians are among those affected by those diseases; and
WHEREAS, Research into rare diseases and development of therapies builds greater understanding of the nature of disease and serves as a foundation for innovation in the United States; and
WHEREAS, A nationwide observance of Rare Disease Day will take place on February 28, 2013, when patients, medical professionals, researchers, government officials, and companies developing treatments for rare diseases will join together to focus attention on rare diseases as a public health issue; now, therefore, be it
Resolved by the Assembly of the State of California, That the Assembly proclaims February 28, 2013, as Rare Disease Day in California; and be it further
Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.