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1 | SENATE RESOLUTION | ||||||
2 | WHEREAS, The National Institutes of Health reports that | ||||||
3 | there are nearly 7,000 diseases and conditions that affect | ||||||
4 | fewer than 200,000 Americans, which means that they are | ||||||
5 | considered rare; and
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6 | WHEREAS, While each of these diseases may affect small | ||||||
7 | numbers of people, rare diseases as a group affect nearly 30 | ||||||
8 | million Americans, 50% of whom are children; and
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9 | WHEREAS, Many rare diseases are serious and debilitating | ||||||
10 | conditions that have a significant impact on the lives of | ||||||
11 | those affected; and
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12 | WHEREAS, While the Food and Drug Administration has | ||||||
13 | approved drugs and biologics for more than 1,000 rare disease | ||||||
14 | indications, millions of Americans have rare diseases for | ||||||
15 | which there is no approved treatment; and
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16 | WHEREAS, Individuals and families affected by rare | ||||||
17 | diseases often experience problems, such as diagnosis delay, | ||||||
18 | difficulty finding a medical expert, and a lack of access to | ||||||
19 | treatments or ancillary services; and
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20 | WHEREAS, While the public is familiar with some rare |
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1 | diseases, such as muscular dystrophy and amyotrophic lateral | ||||||
2 | sclerosis (Lou Gehrig's disease), and is sympathetic to those | ||||||
3 | affected, many patients and families affected by lesser-known | ||||||
4 | rare diseases bear a large share of the burden of funding | ||||||
5 | research and raising public awareness to support the search | ||||||
6 | for treatments; and
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7 | WHEREAS, With nearly one in ten Americans diagnosed with a | ||||||
8 | rare disease, thousands of Illinois residents are among those | ||||||
9 | affected; these people were given a voice in 2017 with the | ||||||
10 | establishment in this State of the Rare Disease Advisory | ||||||
11 | Commission; and
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12 | WHEREAS, The Orphan Drug Act has encouraged and promoted | ||||||
13 | the discovery and development of biopharmaceuticals designed | ||||||
14 | to treat and potentially cure rare diseases; and
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15 | WHEREAS, Many of the world's leading academic | ||||||
16 | institutions, academic medical centers, biotech companies, and | ||||||
17 | pharmaceutical companies that are conducting research and | ||||||
18 | seeking cures for rare diseases are doing so in this State; | ||||||
19 | therefore, be it
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20 | RESOLVED, BY THE SENATE OF THE ONE HUNDRED THIRD GENERAL | ||||||
21 | ASSEMBLY OF THE STATE OF ILLINOIS, that we declare March 6, | ||||||
22 | 2024 as Rare Disease Day in the State of Illinois in order to |
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1 | raise awareness of rare diseases, support individuals and | ||||||
2 | families who struggle with rare diseases, bring attention to | ||||||
3 | the need for research and funding to support the discovery and | ||||||
4 | development of therapies designed to treat and potentially | ||||||
5 | cure rare diseases, and support the continued work of the | ||||||
6 | Illinois Rare Disease Commission; and be it further
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