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1
HOUSE RESOLUTION

 
2    WHEREAS, There are nearly 7,000 diseases and conditions
3considered rare (each affecting fewer than 200,000 Americans)
4in the United States, according to the National Institutes of
5Health; and
 
6    WHEREAS, While each of these diseases may affect small
7numbers of people, rare diseases as a group affect almost 30
8million Americans; and
 
9    WHEREAS, Many rare diseases are serious and debilitating
10conditions that have a significant impact on the lives of those
11affected; and
 
12    WHEREAS, While more than 450 drugs and biologics have been
13approved for the treatment of rare diseases according to the
14Food and Drug Administration, millions of Americans still have
15rare diseases for which 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

 

 

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1diseases, many patients and families affected by less widely
2known rare diseases bear a large share of the burden of funding
3research and raising public awareness to support the search for
4treatments; and
 
5    WHEREAS, Residents of Illinois are among those affected by
6rare diseases as nearly one in 10 Americans have rare diseases;
7and
 
8    WHEREAS, The National Organization for Rare Disorders is
9organizing a nationwide observance of Rare Disease Day on
10February 29, 2016; therefore, be it
 
11    RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE
12NINETY-NINTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, we
13declare February 29, 2016 as "Rare Disease Day" in the State of
14Illinois.