Amended in Assembly February 27, 2014

California Legislature—2013–14 Regular Session

House Resolution No. 32

Introduced by Assembly Member Mullin

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(Coauthors: Assembly Members Achadjian, Alejo, Ammiano, Atkins, Bigelow, Bloom, Bocanegra, Bonilla, Bonta, Brown, Buchanan, Ian Calderon, Campos, Chau, Chávez, Chesbro, Conway, Dababneh, Dahle, Daly, Dickinson, Donnelly, Eggman, Fong, Fox, Frazier, Beth Gaines, Garcia, Gatto, Gonzalez, Gordon, Gorell, Gray, Hagman, Hall, Harkey, Roger Hernández, Holden, Jones, Jones-Sawyer, Levine, Linder, Logue, Lowenthal, Maienschein, Mansoor, Medina, Melendez, Morrell, Muratsuchi, Nazarian, Nestande, Olsen, Pan, Patterson, Perea, John A. Pérez, V. Manuel Pérez, Quirk, Quirk-Silva, Rendon, Ridley-Thomas, Rodriguez, Salas, Skinner, Stone, Ting, Wagner, Waldron, Weber, Wieckowski, Wilk, Williams, and Yamada)

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February 14, 2014

House Resolution No. 32—Relative to Rare Disease Day.

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 400 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, 2014, 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, 2014, 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.