Bill Text: IL SR0726 | 2023-2024 | 103rd General Assembly | Introduced


Bill Title: Declares March 6, 2024 as Rare Disease Day in the State of Illinois in order to raise awareness of rare diseases, support individuals and families who struggle with rare diseases, bring attention to the need for research and funding to support the discovery and development of therapies designed to treat and potentially cure rare diseases, and support the continued work of the Illinois Rare Disease Commission.

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Passed) 2024-03-06 - Resolution Adopted [SR0726 Detail]

Download: Illinois-2023-SR0726-Introduced.html

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SENATE RESOLUTION
2 WHEREAS, The National Institutes of Health reports that
3there are nearly 7,000 diseases and conditions that affect
4fewer than 200,000 Americans, which means that they are
5considered rare; and
6 WHEREAS, While each of these diseases may affect small
7numbers of people, rare diseases as a group affect nearly 30
8million Americans, 50% of whom are children; and
9 WHEREAS, Many rare diseases are serious and debilitating
10conditions that have a significant impact on the lives of
11those affected; and
12 WHEREAS, While the Food and Drug Administration has
13approved drugs and biologics for more than 1,000 rare disease
14indications, millions of Americans have rare diseases for
15which there is no approved treatment; and
16 WHEREAS, Individuals and families affected by rare
17diseases often experience problems, such as diagnosis delay,
18difficulty finding a medical expert, and a lack of access to
19treatments or ancillary services; and
20 WHEREAS, While the public is familiar with some rare

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1diseases, such as muscular dystrophy and amyotrophic lateral
2sclerosis (Lou Gehrig's disease), and is sympathetic to those
3affected, many patients and families affected by lesser-known
4rare diseases bear a large share of the burden of funding
5research and raising public awareness to support the search
6for treatments; and
7 WHEREAS, With nearly one in ten Americans diagnosed with a
8rare disease, thousands of Illinois residents are among those
9affected; these people were given a voice in 2017 with the
10establishment in this State of the Rare Disease Advisory
11Commission; and
12 WHEREAS, The Orphan Drug Act has encouraged and promoted
13the discovery and development of biopharmaceuticals designed
14to treat and potentially cure rare diseases; and
15 WHEREAS, Many of the world's leading academic
16institutions, academic medical centers, biotech companies, and
17pharmaceutical companies that are conducting research and
18seeking cures for rare diseases are doing so in this State;
19therefore, be it
20 RESOLVED, BY THE SENATE OF THE ONE HUNDRED THIRD GENERAL
21ASSEMBLY OF THE STATE OF ILLINOIS, that we declare March 6,
222024 as Rare Disease Day in the State of Illinois in order to

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1raise awareness of rare diseases, support individuals and
2families who struggle with rare diseases, bring attention to
3the need for research and funding to support the discovery and
4development of therapies designed to treat and potentially
5cure rare diseases, and support the continued work of the
6Illinois Rare Disease Commission; and be it further
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