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1
SENATE RESOLUTION

 
2    WHEREAS, Rare diseases and disorders are those which affect
3small patient populations, typically populations smaller than
4200,000 individuals in the United States; and
 
5    WHEREAS, Nearly 7,000 rare diseases affect millions of
6Americans and their families; and
 
7    WHEREAS, Children with rare genetic diseases account for
8more than half of the population affected by rare diseases in
9the United States; and
 
10    WHEREAS, Many rare diseases are serious, life-threatening,
11and lack an effective treatment; and
 
12    WHEREAS, Rare diseases and conditions include
13epidermolysis bullosa, progeria, sickle cell anemia,
14Tay-Sachs, cystic fibrosis, many childhood cancers,
15fibrodysplasia ossificans progressiva, and Williams Syndrome;
16and
 
17    WHEREAS, People with rare diseases experience challenges
18that include difficulty in obtaining an accurate diagnosis,
19limited treatment options, and difficulty finding physicians
20or treatment centers with expertise in their disease; and
 

 

 

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1    WHEREAS, Great strides have been made in research and
2treatment for rare diseases as a result of the Orphan Drug Act
3and other acts of Congress; and
 
4    WHEREAS, The United States Food and Drug Administration and
5National Institutes of Health have established special offices
6to advocate for rare disease research and treatments; and
 
7    WHEREAS, The National Organization for Rare Disorders, an
8organization established in 1983 to provide services to, and
9advocate on behalf of, patients with rare diseases, was a
10primary force behind the enactment of the Orphan Drug Act and
11remains a critical public voice for people with rare diseases;
12and
 
13    WHEREAS, The National Organization for Rare Disorders
14sponsors Rare Disease Day nationwide to increase public
15awareness of rare diseases; and
 
16    WHEREAS, Rare Disease Day has become a global event
17occurring annually on the last day of February; and
 
18    WHEREAS, Rare Disease Day was observed in the United States
19for the first time on February 28, 2009; and
 

 

 

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1    WHEREAS, Rare Disease Day is anticipated to be observed
2globally in years to come, providing hope and information for
3rare disease patients around the world; and
 
4    WHEREAS, It is fitting that the Illinois Senate joins in
5this global observance and takes part in the fight against rare
6diseases; therefore, be it
 
7    RESOLVED, BY THE SENATE OF THE NINETY-EIGHTH GENERAL
8ASSEMBLY OF THE STATE OF ILLINOIS, that we designate the last
9day of February in 2013 and 2014 as Rare Disease Day in the
10State of Illinois; and be it further
 
11    RESOLVED, That we recognize the importance of improving
12awareness and encouraging accurate and early diagnosis of rare
13diseases and disorders; and be it further
 
14    RESOLVED, That we wholeheartedly support a State,
15national, and global commitment to improving access to and
16developing new treatments, diagnostics, and cures for rare
17diseases and disorders.