,,ii  #aac? ,,congress  #a/ ,session    
,s4 #abci  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,june #bg1 #bjac ,mrs4 
,gillibr& introduc$ ! foll[+ bill2 :i* 0
 read twice & ref]r$ to ! ,committee on 
,heal?1 ,education1 ,labor1 & ,p5sions  
,a ,,bill  ,to exp& ! rese>* & aw>5ess  
activities ( ! ,national ,in/itute (    
,ar?ritis & ,musculoskeletal & ,sk9     
,diseases & ! ,c5t]s = ,disease ,control
 & ,prev5tion ) respect to scl]od]ma1 & 
= o!r purposes4  #a4 ,%ort title ,?is   
,act may be cit$ z ! ,scl]od]ma ,rese>* 
& ,aw>5ess ,act4  #b4 ,f9d+s ,!         
,congress f9ds z foll[s3  7#a7          
,scl]od]ma is a *ronic1 disabl+ & (t5   
fatal autoimmune disease 9 :i* ! body's 
s(t tissues contract & h>d5 due to an   
ov]production ( collag54  7#b7          
,scl]od]ma causes damage to "o or m ( ! 
body's organ sy/ems1 includ+ ! sk91     
he>t1 lungs1 kidneys1 ga/ro9te/9al      
tract1 & blood vessels4  7#c7 ,x is     
e/imat$ t #cjj1jjj p 9 ! ,unit$ ,/ates  
suff] f scl]od]ma1 #hj p]c5t ( :om are  

wom5 (t5 diagnos$ dur+ _! *ild be>+     
ye>s4  7#d7 ,*octaw ,native ,am]icans1  
,african-,am]icans1 & ,hispanics are    
disproportionately affect$ by scl]od]ma 
& t5d to exhibit m rapidly progress+ &  
sev]e cases ( ! disease4  7#e7 ,! causes
 ( scl]od]ma are unkn[n4  7#f7          
,scl]od]ma is associat$ ) _m o!r        
conditions includ+ pulmon>y hyp]t5sion1 
ga/rop>esis1 ,raynaud's ph5om5on1       
,sjgr5's ,syndrome & lupus4  7#g7 ,!    
e/imat$ total annual economic impact (  
scl]od]ma 9 ! ,unit$ ,/ates is 9 excess 
( #a1ejj1jjj1jjj4  7#h7 ,annual ,f$]al  
support = scl]od]ma rese>* at !         
,national ,in/itutes ( ,heal? is        
curr5tly e/imat$ at #bj1jjj1jjj4  #c4   
,national in/itute ( ar?ritis &         
musculoskeletal & sk9 diseases2         
scl]od]ma rese>* expansion  7a7 ,9 g5]al
 ,! ,director ( ,! ,national ,in/itute (
 ,ar?ritis & ,musculoskeletal & ,sk9    
,diseases %all exp&1 int5sify1 &        
coord9ate ! activities ( ! ,in/itute )  
respect to scl]od]ma1 ) p>ticul>        

emphasis on ! foll[+ areas3  7#a7       
,rese>* focus$ on ! etiology ( scl]od]ma
 & ! developm5t ( new treatm5t options4 
7#b7 ,cl9ical rese>* to evaluate new    
treatm5ts options4  7#c7 ,basic rese>*  
on ! relation%ip betwe5 scl]od]ma &     
second>y conditions su* z pulmon>y      
hyp]t5sion1 ga/rop>esis1 ,raynaud's     
ph5om5on1 ,sjgr5's ,syndrome 7& o!r     
diseases z det]m9$ by ! ,director74     
7#d7 ,e/abli%m5t ( scl]od]ma pati5t     
regi/ries1 includ+ family & *ildhood    
onset regi/ries4  7#e7 ,support = tra9+ 
( new cl9icians & inve/igators )        
exp]tise 9 scl]od]ma4  7b7 ,bi5nial     
reports ,z a "p ( ! bi5nial report made 
"u section #djc ( ! ,public ,heal?      
,s]vice ,act 7#db ,u4,s4,c4 #bhc71 !    
,secret>y %all include in=mation on !   
/atus ( scl]od]ma rese>* at ! ,national 
,in/itutes ( ,heal?4  7c7 ,au?orization 
( appropriations  7#a7 ,9 g5]al ,= !    
purpose ( c>ry+ out subsection 7a71 !re 
are au?oriz$ to be appropriat$          
#be1jjj1jjj 9 fiscal ye> #bjad1         

#cj1jjj1jjj 9 fiscal ye> #bjae1 &       
#ce1jjj1jjj 9 fiscal ye> #bjaf4  7#b7   
,res]vations ,( ! am\nts au?oriz$ to be 
appropriat$ "u p>agraph 7#a71 n m ?an   
#ae p]c5t %all be res]v$ = ! tra9+ (    
qualifi$ heal? pr(essionals 9 biom$ical 
rese>* focus$ on scl]od]ma4  #d4        
,promot+ public aw>5ess ( scl]od]ma  7a7
 ,9 ,g5]al ,! ,secret>y1 act+ ?r\gh !   
,director ( ! ,c5t]s = ,disease ,control
 & ,prev5tion1 %all c>ry out an         
educational campaign to increase public 
aw>5ess ( scl]od]ma4 ,pr9t1 video1 &    
,web-bas$ mat]ials di/ribut$ "u ?is     
program may include--  7#a7 basic       
in=mation on scl]od]ma & its symptoms2  
7#b7 in=mation on ! incid5ce & preval5ce
 ( scl]od]ma2  7#c7 diseases &          
conditions affiliat$ ) scl]od]ma2 or    
7#d7 ! importance ( e>ly diagnosis &    
treatm5t4  7b7 ,dissem9ation (          
,in=mation ,! ,secret>y is enc\rag$ to  
dissem9ate in=mation "u subsection 7a7  
?r\gh a coop]ative agreem5t ) a national
 nonpr(it entity ) exp]tise 9 scl]od]ma4

  7c7 ,report to ,congress ,n lat] ?an  
,septemb] #cj1 #bjac1 ! ,secret>y %all  
report to ! ,committees on ,heal?1      
,education1 ,labor1 & ,p5sions &        
,appropriations ( ! ,s5ate & !          
,committees on ,en]gy & ,comm]ce &      
,appropriations ( ! ,h\se (             
,repres5tatives on ! /atus ( activities 
"u ?is section4  7d7 ,au?orization (    
,appropriations ,= ! purpose ( c>ry+ out
 ?is section1 !re is au?oriz$ to be     
appropriat$ #b1ejj1jjj = ea* ( fiscal   
ye>s #bjad1 #bjae1 & #bjaf4