P1 1WHEREAS, There are nearly 7,000 diseases and conditions
2considered rare, each affecting fewer than 200,000 Americans;
3and
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 biologics
14have been approved for the treatment of rare diseases affecting up
15to 14 million people according to the United States Food and Drug
16
Administration, 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 rare diseases
20struggle with obtaining an accurate and timely diagnosis, few
21treatment options, and accessing or being reimbursed for treatment;
22and
23WHEREAS, While some rare diseases are relatively well known,
24many others are not known at all by the public, making patients
P2 1and their families bear a large share of the burden for fundraising
2and research; and
3WHEREAS, Because nearly one in 10 Americans has a rare
4disease, Californians are among those affected by those diseases;
5and
6WHEREAS, Research into rare diseases and development of
7therapies builds greater understanding of the nature of disease and
8serves as a foundation
for innovation in the United States; and
9WHEREAS, A nationwide observance of Rare Disease Day will
10take place on February 28, 2014, when patients, medical
11professionals, researchers, government officials, and companies
12developing treatments for rare diseases will join together to focus
13attention on rare diseases as a public health issue; now, therefore,
14be it
15Resolved by the Assembly of the State of California, That the
16Assembly proclaims February 28, 2014, as Rare Disease Day in
17California; and be it further
18Resolved, That the Chief Clerk of the Assembly transmit copies
19of this resolution to the author for appropriate distribution.
O
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