P1 1WHEREAS, There are nearly 7,000 diseases and conditions
2that are considered rare, each affecting fewer than 200,000
3Americans; and
4WHEREAS, Of these 7,000 rare diseases, more than 80 percent
5are considered ultra rare, affecting less than a few thousand
6Americans; and
7WHEREAS, While each of these diseases may affect small
8numbers of people, rare diseases as a group affect almost 30 million
9Americans; and
10WHEREAS, Many rare diseases are serious and debilitating
11conditions that have a significant impact on the lives of those
12affected; and
13WHEREAS, While more than 400 orphan drugs and biologicals
14have been approved for the treatment of rare diseases affecting up
15to 14 million people, according to the United States Food and Drug
16Administration, millions of Americans affected by rare diseases
17have no treatment specific to their disease; and
18WHEREAS, Besides dealing with their specific medical
19problems, individuals and their families affected by these rare
20diseases struggle with obtaining accurate and timely diagnosis,
21few treatment options, and accessing or being reimbursed for
22treatment; and
P2 1WHEREAS, While some rare diseases are relatively well known,
2many others are not known at all by the public, making patients
3and their families bear a large share of the burden of fundraising
4and research; and
5WHEREAS, Nearly one in 10 Americans has a rare disease,
6and a large number of Californians are among those affected by
7those diseases; and
8WHEREAS, Research into rare diseases and development of
9therapies builds greater understanding of the nature of disease and
10serves as a foundation for innovation in the United States; and
11WHEREAS, A nationwide observance of Rare Disease Day
12will take place on February 28, 2015, when patients, medical
13professionals, researchers, government officials, and companies
14developing treatments for rare diseases will join together to focus
15attention on rare diseases as a public health issue; now, therefore,
16be it
17Resolved by the Assembly of the State of California, That the
18Assembly proclaims February 28, 2015, as Rare Disease Day in
19California; and be it further
20Resolved, That the Chief Clerk of the Assembly transmit copies
21of this resolution to the author for appropriate distribution.
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