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| | HR0651 | | LRB102 26110 LAW 35602 r |
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1 | | HOUSE RESOLUTION
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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 percent 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 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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| | HR0651 | - 2 - | LRB102 26110 LAW 35602 r |
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1 | | diseases, such as muscular dystrophy and amyotrophic lateral |
2 | | sclerosis, better known as Lou Gehrig's disease, and is |
3 | | sympathetic to those affected, many patients and families |
4 | | affected by lesser-known rare diseases bear a large share of |
5 | | the burden of funding research and raising public awareness to |
6 | | support the search 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 by rare diseases; those affected were given a voice |
10 | | in 2017 with the establishment in this state of the Rare |
11 | | Disease Advisory 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 HOUSE OF REPRESENTATIVES OF THE ONE |
21 | | HUNDRED SECOND GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that |
22 | | we declare February 28, 2022 as Rare Disease Day in the State |
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1 | | of Illinois in order to raise awareness of rare diseases, |
2 | | support individuals and families who struggle with rare |
3 | | diseases, bring attention to the need for research and funding |
4 | | to support the discovery and development of therapies designed |
5 | | to treat and potentially cure rare diseases, and support the |
6 | | continued work of the Illinois Rare Disease Commission; and be |
7 | | it further
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8 | | RESOLVED, That suitable copies of this resolution be |
9 | | presented to iBIO, the Illinois Biotechnology Industry |
10 | | Organization, Chairperson Maria Bellefeuille of the Illinois |
11 | | Rare Disease Commission, and the Department of Public Health.
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