Illinois 2025-2026 Regular Session

Illinois Senate Bill SR0145 Compare Versions

Only one version of the bill is available at this time.

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3	3	1 SENATE RESOLUTION
4	4	2 WHEREAS, The National Institutes of Health reports that
5	5	3 there are nearly 7,000 diseases and conditions that affect
6	6	4 fewer than 200,000 Americans, which means that they are
7	7	5 considered rare; and
8	8	6 WHEREAS, While each of these diseases may affect small
9	9	7 numbers of people, rare diseases as a group affect nearly 30
10	10	8 million Americans, 50% of whom are children; and
11	11	9 WHEREAS, Many rare diseases are serious and debilitating
12	12	10 conditions that have a significant impact on the lives of
13	13	11 those affected; and
14	14	12 WHEREAS, While the U.S. Food and Drug Administration has
15	15	13 approved drugs and biologics for more than 1,000 rare disease
16	16	14 indications, millions of Americans have rare diseases for
17	17	15 which there is no approved treatment; and
18	18	16 WHEREAS, Individuals and families affected by rare
19	19	17 diseases often experience problems, such as diagnosis delay,
20	20	18 difficulty finding a medical expert, and a lack of access to
21	21	19 treatments or ancillary services; and
22	22	20 WHEREAS, While the public is familiar with some rare
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31	31	1 diseases, such as muscular dystrophy and amyotrophic lateral
32	32	2 sclerosis (Lou Gehrig's disease), and is sympathetic to those
33	33	3 affected, many patients and families affected by lesser-known
34	34	4 rare diseases bear a large share of the burden of funding
35	35	5 research and raising public awareness to support the search
36	36	6 for treatments; and
37	37	7 WHEREAS, With nearly one in ten Americans diagnosed with a
38	38	8 rare disease, thousands of Illinois residents are among those
39	39	9 affected; these people were given a voice in 2017 with the
40	40	10 establishment of the Rare Disease Advisory Commission in this
41	41	11 State; and
42	42	12 WHEREAS, The Orphan Drug Act has encouraged and promoted
43	43	13 the discovery and development of biopharmaceuticals designed
44	44	14 to treat and potentially cure rare diseases; and
45	45	15 WHEREAS, Many of the world's leading academic
46	46	16 institutions, academic medical centers, biotech companies, and
47	47	17 pharmaceutical companies that are conducting research and
48	48	18 seeking cures for rare diseases are doing so in this State;
49	49	19 therefore, be it
50	50	20 RESOLVED, BY THE SENATE OF THE ONE HUNDRED FOURTH GENERAL
51	51	21 ASSEMBLY OF THE STATE OF ILLINOIS, that we declare March 5,
52	52	22 2025 as Rare Disease Day in the State of Illinois in order to
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63	63	1 raise awareness of rare diseases, support individuals and
64	64	2 families who struggle with rare diseases, bring attention to
65	65	3 the need for research and funding to support the discovery and
66	66	4 development of therapies designed to treat and potentially
67	67	5 cure rare diseases, and support the continued work of the
68	68	6 Illinois Rare Disease Commission; and be it further
69	69	7 RESOLVED, That suitable copies of this resolution be
70	70	8 presented to the Illinois Biotechnology Innovation
71	71	9 Organization, Chairperson Maria Pollock of the Illinois Rare
72	72	10 Disease Commission, and the Department of Public Health.
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