Illinois General Assembly - Full Text of HR0651
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Full Text of HR0651  102nd General Assembly

HR0651 102ND GENERAL ASSEMBLY


  

 


 
HR0651LRB102 26110 LAW 35602 r

1
HOUSE 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 percent 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 lack of access to
19treatments or ancillary services; and
 
20    WHEREAS, While the public is familiar with some rare

 

 

HR0651- 2 -LRB102 26110 LAW 35602 r

1diseases, such as muscular dystrophy and amyotrophic lateral
2sclerosis, better known as Lou Gehrig's disease, and is
3sympathetic to those affected, many patients and families
4affected by lesser-known rare diseases bear a large share of
5the burden of funding research and raising public awareness to
6support the search for treatments; and
 
7    WHEREAS, With nearly one in ten Americans diagnosed with a
8rare disease, thousands of Illinois residents are among those
9affected by rare diseases; those affected were given a voice
10in 2017 with the establishment in this state of the Rare
11Disease Advisory Commission; 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 HOUSE OF REPRESENTATIVES OF THE ONE
21HUNDRED SECOND GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that
22we declare February 28, 2022 as Rare Disease Day in the State

 

 

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1of Illinois in order to raise awareness of rare diseases,
2support individuals and families who struggle with rare
3diseases, bring attention to the need for research and funding
4to support the discovery and development of therapies designed
5to treat and potentially cure rare diseases, and support the
6continued work of the Illinois Rare Disease Commission; and be
7it further
 
8    RESOLVED, That suitable copies of this resolution be
9presented to iBIO, the Illinois Biotechnology Industry
10Organization, Chairperson Maria Bellefeuille of the Illinois
11Rare Disease Commission, and the Department of Public Health.