,,ii ,cal5d> ,no4 #dbi #aah? ,,congress 
#b;d ,session  ,s4 #cgeg  ,,9 ,,!       
,,s5ate ,,( ,,! ,,unit$ ,,/ates         
,febru>y #g1 #bjbd,mr4 ,durb9 7=        
himself1 ,mr4 ,"y1 ,mr4 ,casey1 ,ms4    
,smi?1 & ,mrs4 ,gillibr&7 introduc$ !   
foll[+ bill2 :i* 0 read twice & ref]r$  
to ! ,committee on ,heal?1 ,education1  
,labor1 & ,p5sions  ,june #ah1          
#bjbd,report$ by ,mr4 ,s&]s1 ) an       
amendment,strike out all aft] ! enact+  
clause & ins]t ! "p pr9t$ 9 italic  ,a  
,,bill  ,to reau?orize ! cong5ital he>t 
disease rese>*1 surveillance1 & aw>5ess 
program ( ! ,c5t]s = ,disease ,control &
 ,prev5tion1 & = o!r purposes4  #a4     
,%ort title ,?is ,act may be cit$ z !   
,cong5ital ,he>t ,futures               
,reau?orization ,act ( #bjbd4  #b4      
,national cong5ital he>t disease rese>*1
 surveillance1 & aw>5ess ,section       
#cii,v-#b ( ! ,public ,heal? ,s]vice    
,act 7#db ,u4,s4,c4 #bhj;g-#ac7 is      
am5d$-- 7#a7 by r$esignat+ subsections  
7f7 & 7g7 z subsections 7h7 & 7i71      

respectively2  7#b7 by ins]t+ aft]      
subsection 7e7 ! foll[+3  7f7 ,/akehold]
 work%op  7#a7 ,9 g5]al ,n lat] ?an #a  
ye> aft] ! date ( enactm5t ( !          
,cong5ital ,he>t ,futures               
,reau?orization ,act ( #bjbd1 !         
,secret>y %all conv5e a work%op compos$ 
( subject matt] exp]ts1 on adult pati5ts
 liv+ ) cong5ital he>t disease1 to--    
7,a7 id5tify rese>* gaps & opportunities
 relat$ to ! lifelong ne$s ( cong5ital  
he>t disease pati5ts1 includ+ long-t]m  
heal? outcomes1 quality ( life1 m5tal   
heal?1 & heal? c>e utilization2  7,b7   
assess ! work=ce capacity 9 ! ,unit$    
,/ates ( heal? c>e provid]s :o treat    
adult pati5ts liv+ ) cong5ital he>t     
disease1 & options to address any su*   
%ortages 9 su* work=ce1 :i* may include 
/rategies to exp& fell[%ip tra9+        
programs & support regional c>e c5t]s2 &
  7,c7 fo/] collaboration & dissem9ation
 ( in=mation across ,f$]al ag5cies1     
heal? c>e provid]s1 rese>*]s1 & pati5t  
organizations4  7#b7 ,composition ,!    

work%op describ$ 9 p>agraph 7#a7 %all be
 l$ by ! ,secret>y1 & %all involve      
p>ticipants t include1 z appropriate1   
/akehold]s repres5t+ pati5t             
organizations1 heal? c>e pr(essionals1  
rese>* entities1 heal? insurance        
provid]s1 accr$it+ organizations1 &     
relevant ,f$]al ag5cies1 includ+ !      
,c5t]s = ,disease ,control & ,prev5tion1
 ! ,national ,in/itutes ( ,heal?1 & !   
,heal? ,res\rces & ,s]vices             
,adm9i/ration4  7g7 ,report ,n lat] ?an 
#c ye>s aft] ! date ( enactm5t ( !      
,cong5ital ,he>t ,futures               
,reau?orization ,act ( #bjbd1 !         
,secret>y %all issue a report to !      
,committee on ,heal?1 ,education1       
,labor1 & ,p5sions ( ! ,s5ate & !       
,committee on ,en]gy & ,comm]ce ( !     
,h\se ( ,repres5tatives on f9d+s &      
recomm5dations ( ! ,secret>y ) respect  
to /rategies to advance rese>* relat$ to
 ! lifelong ne$s ( cong5ital he>t       
disease pati5ts & address work=ce       
%ortages ( provid]s = adult pati5ts liv+

 ) cong5ital he>t disease1 &1 z         
appropriate1 progress made by !         
,secret>y to implem5t su* /rategies & a 
plan = implem5t+ su* recomm5dations4  2 
&  7#c7 9 subsection 7i71 z s           
r$esignat$1 by /rik+ #bjbj ?r\gh #bjbd &
 ins]t+ #bjbe ?r\gh #bjbi4  #a4 ,%ort   
title ,?is ,act may be cit$ z !         
,cong5ital ,he>t ,futures               
,reau?orization ,act ( #bjbd4  #b4      
,national cong5ital he>t disease rese>*1
 surveillance1 & aw>5ess ,section       
#cii,v-#b ( ! ,public ,heal? ,s]vice    
,act 7#db ,u4,s4,c4 #bhj;g-#ac7 is      
am5d$-- 7#a7 by r$esignat+ subsections  
7f7 & 7g7 z subsections 7h7 & 7i71      
respectively2  7#b7 by ins]t+ aft]      
subsection 7e7 ! foll[+3  7f7 ,/akehold]
 work%op  7#a7 ,9 g5]al ,n lat] ?an #a  
ye> aft] ! date ( enactm5t ( !          
,cong5ital ,he>t ,futures               
,reau?orization ,act ( #bjbd1 !         
,secret>y %all conv5e a work%op on      
cong5ital he>t disease1 to-- 7,a7       
id5tify rese>* gaps & opportunities     

relat$ to ! ne$s ( adults ) cong5ital   
he>t disease1 includ+ ) respect to      
long-t]m heal? outcomes1 quality ( life1
 m5tal heal?1 & heal? c>e utilization2  
7,b7 assess ! work=ce capacity 9 !      
,unit$ ,/ates to treat adults )         
cong5ital he>t disease1 & options to    
address any %ortages 9 su* work=ce1 :i* 
may include /rategies relat$ to fell[%ip
 tra9+ programs2 &  7,c7 fo/]           
collaboration & dissem9ation ( in=mation
 relat$ to cong5ital he>t disease among 
,f$]al ag5cies1 heal? c>e provid]s1     
rese>*]s1 pati5t advocates1 & o!r       
relevant /akehold]s4  7#b7 ,composition 
,! work%op describ$ 9 p>agraph 7#a7 %all
 include relevant /akehold]s1 su* z     
pati5t advocates1 heal? c>e provid]s1   
rese>*]s1 & heal? insurance issu]s1 &   
repres5tatives ( relevant ,f$]al        
ag5cies1 includ+ ! ,c5t]s = ,disease    
,control & ,prev5tion1 ! ,national      
,in/itutes ( ,heal?1 & ! ,heal?         
,res\rces & ,s]vices ,adm9i/ration4  7g7
 ,report ,n lat] ?an #c ye>s aft] ! date

 ( enactm5t ( ! ,cong5ital ,he>t        
,futures ,reau?orization ,act ( #bjbd1 !
 ,secret>y %all issue a report to !     
,committee on ,heal?1 ,education1       
,labor1 & ,p5sions ( ! ,s5ate & !       
,committee on ,en]gy & ,comm]ce ( !     
,h\se ( ,repres5tatives on f9d+s &      
recomm5dations ( ! ,secret>y ) respect  
to /rategies to advance rese>* relat$ to
 ! ne$s ( individuals ( all ages )      
cong5ital he>t disease & address work=ce
 %ortages ( provid]s = adults )         
cong5ital he>t disease1 &1 z            
appropriate1 a plan = implem5t+ su*     
/rategies1 includ+ any progress to date4
  2 &  7#c7 9 subsection 7i71 z s       
r$esignat$1 by /rik+ #bjbj ?r\gh #bjbd &
 ins]t+ #bjbe ?r\gh #bjbi4  ,june #ah1  
#bjbd,report$ ) an am5dm5t