Amended in Assembly March 2, 2015

California Legislature—2015–16 Regular Session

House Resolution No. 6

Introduced by Assembly Member Achadjian

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(Coauthor: Assembly Member Mullin)

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(Coauthors: Assembly Members Mullin, Alejo, Travis Allen, Atkins, Baker, Bigelow, Bloom, Bonilla, Bonta, Brown, Burke, Calderon, Campos, Chau, Chávez, Chiu, Chu, Cooper, Dababneh, Dahle, Daly, Dodd, Eggman, Frazier, Beth Gaines, Gallagher, Cristina Garcia, Gatto, Gipson, Gomez, Gonzalez, Gordon, Gray, Grove, Harper, Roger Hernández, Holden, Irwin, Jones, Jones-Sawyer, Kim, Lackey, Levine, Linder, Lopez, Low, Maienschein, Mathis, Mayes, McCarty, Medina, Melendez, Nazarian, Obernolte, O'Donnell, Patterson, Perea, Quirk, Rendon, Ridley-Thomas, Rodriguez, Salas, Santiago, Steinorth, Mark Stone, Ting, Wagner, Waldron, Weber, Williams, and Wood)

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February 2, 2015

House Resolution No. 6—Relative to Rare Disease Day.

WHEREAS, There are nearly 7,000 diseases and conditions
that are 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 biologicals
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 these rare
diseases struggle with obtaining 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 of fundraising
and research; and

WHEREAS, Nearly one in 10 Americans has a rare disease,
and a large number of 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, 2015, 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, 2015, 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.