,i  #aah? ,,congress  #a/ ,session  ,h4 
,r4 #fdab  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,novemb] #ad1         
#bjbc,mr4 ,mol9>o 7= himself1 ,ms4      
,budz9ski1 & ,mr4 ,lawl]7 introduc$ !   
foll[+ bill2 :i* 0 ref]r$ to !          
,committee on ,en]gy & ,comm]ce  ,a     
,,bill  ,to am5d title ,,xxvii ( !      
,public ,heal? ,s]vice ,act to provide  
c]ta9 in=mational res\rces relat$ to    
,d[n syndrome4  #a4 ,%ort title ,?is    
,act may be cit$ z ! ,d[n ,syndrome     
,diagnosis ,act4  #b4 ,provid+          
in=mational res\rces relat$ to ,d[n     
syndrome  7a7 ,9 g5]al ,subp>t ,,ii ( "p
 ,a ( title ,,xxvii ( ! ,public ,heal?  
,s]vice ,act 7#db ,u4,s4,c4 #cjj;gg-#aa 
et seq47 is am5d$ by add+ at ! end !    
foll[+ new section3  #bgcj4 ,in=mational
 res\rces relat$ to ,d[n syndrome  7a7  
,9 g5]al ,9 ! case ( an individual      
enroll$ "u a gr\p heal? plan or gr\p or 
individual heal? insurance cov]age :o is
 diagnos$ ) ,d[n syndrome :ile s enroll$
 7or :o is pregnant & is giv5 a         

diagnosis ( ,d[n syndrome ) respect to !
 fetus :ile s enroll$71 n lat] ?an #fj  
days aft] su* plan or cov]age is made   
aw>e 7?r\gh claims data or o!rwise7 ( ! 
relevant diagnosis1 su* plan or cov]age 
%all provide ! in=mational res\rces     
describ$ 9 subsection 7b7 to-- 7#a7 !   
individual2 or  7#b7 if ! individual is 
"u ! age ( #ah1 a p>5t or legal gu>dian 
( ! individual4  7b7 ,in=mational       
res\rces describ$ ,= purposes (         
subsection 7a71 ! in=mational res\rces  
describ$ 9 ?is subsection are ! foll[+3 
7#a7 ,writt5 in=mation ab\t ,d[n        
syndrome1 includ+ in=mation on ! range (
 physical1 developm5tal1 educational1 & 
psy*osocial outcomes = individuals liv+ 
) ,d[n syndrome1 t-- 7,a7 is up-to-date1
 evid5ce-bas$1 & culturally &           
l+ui/ically appropriate = ! individual2 
&  7,b7 0 develop$ by-- 7i7 m$ical      
exp]ts or repres5tatives ( national     
m$ical or g5etics organizations2 &  7ii7
 disability exp]ts or repres5tatives (  
pati5t advocacy gr\ps4  7#b7 ,contact   

in=mation = #a or m organizations t     
specialize 9 ,d[n syndrome support1 su* 
z ! ,national ,d[n ,syndrome ,congress1 
! ,national ,d[n ,syndrome ,society1 or 
! ,global ,d[n ,syndrome ,f\ndation4  4 
7b7 ,effective date ,! am5dm5t made by  
subsection 7a7 %all apply ) respect to  
plan ye>s beg9n+ on or aft] ,janu>y #a1 
#bjbd4