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

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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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SR0726 LRB103 36811 MST 66922 r
SENATE RESOLUTION
WHEREAS, The National Institutes of Health reports that
there are nearly 7,000 diseases and conditions that affect
fewer than 200,000 Americans, which means that they are
considered rare; and
WHEREAS, While each of these diseases may affect small
numbers of people, rare diseases as a group affect nearly 30
million Americans, 50% of whom are children; and
WHEREAS, Many rare diseases are serious and debilitating
conditions that have a significant impact on the lives of
those affected; and
WHEREAS, While the Food and Drug Administration has
approved drugs and biologics for more than 1,000 rare disease
indications, millions of Americans have rare diseases for
which there is no approved treatment; and
WHEREAS, Individuals and families affected by rare
diseases often experience problems, such as diagnosis delay,
difficulty finding a medical expert, and a lack of access to
treatments or ancillary services; and
WHEREAS, While the public is familiar with some rare

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diseases, such as muscular dystrophy and amyotrophic lateral
sclerosis (Lou Gehrig's disease), and is sympathetic to those
affected, many patients and families affected by lesser-known
rare diseases bear a large share of the burden of funding
research and raising public awareness to support the search
for treatments; and
WHEREAS, With nearly one in ten Americans diagnosed with a
rare disease, thousands of Illinois residents are among those
affected; these people were given a voice in 2017 with the
establishment in this State of the Rare Disease Advisory
Commission; and
WHEREAS, The Orphan Drug Act has encouraged and promoted
the discovery and development of biopharmaceuticals designed
to treat and potentially cure rare diseases; and
WHEREAS, Many of the world's leading academic
institutions, academic medical centers, biotech companies, and
pharmaceutical companies that are conducting research and
seeking cures for rare diseases are doing so in this State;
therefore, be it
RESOLVED, BY THE SENATE OF THE ONE HUNDRED THIRD GENERAL
ASSEMBLY OF THE STATE OF ILLINOIS, that we declare March 6,
2024 as Rare Disease Day in the State of Illinois in order to

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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; and be it further