Illinois SR 145: MEMORIAL - GLEN DEFFENBAUGH

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SR0145LRB104 12373 LAW 22609 r

1SENATE 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% 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 U.S. 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 a lack of access to 

19treatments or ancillary services; and

20 WHEREAS, While the public is familiar with some rare 

SR0145- 2 -LRB104 12373 LAW 22609 r

1diseases, such as muscular dystrophy and amyotrophic lateral 

2sclerosis (Lou Gehrig's disease), and is sympathetic to those 

3affected, many patients and families affected by lesser-known 

4rare diseases bear a large share of the burden of funding 

5research and raising public awareness to support the search 

6for treatments; and

7 WHEREAS, With nearly one in ten Americans diagnosed with a 

8rare disease, thousands of Illinois residents are among those 

9affected; these people were given a voice in 2017 with the 

10establishment of the Rare Disease Advisory Commission in this 

11State; and

12 WHEREAS, The Orp