,,ii  #aai? ,,congress  #a/ ,session    
,s4 #ahch  ,,9 ,,! ,,s5ate ,,( ,,!      
,,unit$ ,,/ates  ,may #ba1 #bjbe ,mr4   
,hick5loop] 7= himself1 ,mr4 ,moran1    
,mr4 ,book]1 & ,mr4 ,mull97 introduc$ ! 
foll[+ bill2 :i* 0 read twice & ref]r$  
to ! ,committee on ,heal?1 ,education1  
,labor1 & ,p5sions  ,a ,,bill  ,to am5d 
! ,public ,heal? ,s]vice ,act to        
au?orize ! ,secret>y ( ,heal? & ,human  
,s]vices to c>ry out a program ( rese>*1
 tra9+1 & inve/igation relat$ to ,d[n   
syndrome1 & = o!r purposes4  #a4  ,%ort 
title  ,?is ,act may be cit$ z !        
,de,ondra ,dixon ,,include ,project ,act
 ( #bjbe4  #b4  ,f9d+s  ,congress f9ds !
 foll[+3 7#a7 ,d[n syndrome is ! mo/    
common *romosomal disord]4 ,ea* ye>1    
ab\t #f1jjj babies born 9 ! ,unit$      
,/ates h ,d[n syndrome1 affect+ ab\t #a 
9 e #gjj babies born4  7#b7 ,individuals
 ) ,d[n syndrome h a full or p>tial     
extra copy ( *romosome #ba t leads to   
c]ta9 physical1 intellectual1 &         
developm5tal *all5ges4  7#c7 ,life      

expectancy ( individuals ) ,d[n syndrome
 9 ! ,unit$ ,/ates has increas$         
dramatically 9 rec5t decades4 ,9 #aifj1 
! av]age life expectancy 0 ab\t #aj     
ye>s4 ,today1 ! av]age life expectancy (
 an individual ) ,d[n syndrome is ne>ly 
#fj ye>s4  7#d7 ,individuals ) ,d[n     
syndrome c att5d s*ool1 "w1 make _! own 
life decisions1 h mean+ful relation%ips1
 vote1 & contribute to society4  7#e7   
,individuals ) ,d[n syndrome are at an  
increas$ risk = c]ta9 m$ical conditions1
 su* z autoimmune disord]s1 leukemia1   
cong5ital he>t disease1 sleep           
dysfunction1 & ,alzheim]'s disease1 b   
may be at a decreas$ risk = o!r         
conditions4  7#f7 ,rese>* & m$ical c>e  
support+ individuals ) ,d[n syndrome &  
_! unique disease pr(ile w improve heal?
 outcomes & may pot5tially lead to      
treatm5ts = individuals born ) or )\t   
,d[n syndrome :o suff] f diseases       
associat$ ) t unique pr(ile4  #c4  ,d[n 
syndrome rese>*  ,"p ,a ( title ,,iv ( !
 ,public ,heal? ,s]vice ,act 7#db       

,u4,s4,c4 #bha et seq47 is am5d$ by add+
 at ! end ! foll[+3  #djd,p4  ,d[n      
syndrome rese>*  7a7  ,9 g5]al  ,!      
,secret>y1 act+ ?r\gh ! ,(fice ( !      
,director ( ,,nih1 & 9 consultation )   
o!r ,f$]al ag5cies & p>tn]s1 %all c>ry  
out1 directly or ?r\gh grants or        
contracts1 a program ( rese>*1 tra9+1 & 
inve/igation relat$ to ,d[n syndrome to 
be kn[n z ! ,i,nvestigation (           
,co-occurr+ conditions across !         
,lifespan to ,und]/& ,d[n syndrom,e     
,project or ! ,,include ,project4  7b7  
,program elem5ts  ,! program "u         
subsection 7a7 %all include rese>*1     
tra9+1 & inve/igation relat$ to--  7#a7 
high-risk1 high rew>d basic sci5ce      
/udies ( ! effects ( *romosome #ba on   
human developm5t & heal?2  7#b7 assembl+
 & ma9ta9+ a l>ge /udy population (     
individuals ) ,d[n syndrome2  7#c7 exp&+
 ! numb] ( cl9ical trials t are         
inclusive (1 or expressly =1 individuals
 ) ,d[n syndrome1 includ+ novel         
biom$ical & ph>macological int]v5tions &

 o!r !rapies design$ to promote or      
enhance activities ( daily liv+2  7#d7 !
 biological me*anisms 9 individuals )   
,d[n syndrome responsible = /ructural & 
functional anomalies 9 cells1 tissues1 &
 organs1 cognitive & behavioral         
dysfunction1 & /unt$ gr[?2  7#e7 !      
id5tification ( biom>k]s = ! detection (
 risk factors1 diagnosis1 & cu/omiz$    
int]v5tions & treatm5ts = conditions    
co-occurr+ ) ,d[n syndrome2  7#f7 :y    
sev]al co-occurr+ conditions1 su* z     
,alzheim]'s disease & autoimmunity1 are 
preval5t 9 individuals ) ,d[n syndrome &
 h[ su* conditions c be treat$          
concurr5tly ) ,d[n syndrome2 &  7#g7    
improv+ ! quality ( life ( individuals )
 ,d[n syndrome & _! families4  7c7      
,coord9ation2 prioritiz+ nonduplicative 
rese>*  ,! ,secret>y %all ensure t--    
7#a7 ! programs & activities ( !        
in/itutes1 c5t]s1 ag5cies1 & (fices ( ! 
,national ,in/itutes ( ,heal? relat+ to 
,d[n syndrome & co-occurr+ conditions   
are coord9at$1 includ+ ?r\gh ! ,division

 ( ,program ,coord9ation1 ,plann+1 &    
,/rategic ,initiatives "u sections      
#djb7;b77#g7 & #djb;,a7c72 &  7#b7 su*  
in/itutes1 c5t]s1 ag5cies1 & (fices     
prioritize1 z appropriate1 ,d[n syndrome
 rese>* t does n duplicate exi/+ rese>* 
activities ( ! ,national ,in/itutes (   
,heal?4  7d7  ,te*nical assi/ance  ,!   
,secret>y %all provide te*nical         
assi/ance to grantees & o!r involv$     
entities1 z appropriate1 = c>ry+ out    
activities pursuant to ?is section4  7e7
  ,bi5nial reports to ,congress  7#a7   
,9 g5]al  ,! ,secret>y %all submit1 on a
 bi5nial basis1 to ! ,committee on      
,en]gy & ,comm]ce & ! ,subcommittee on  
,labor1 ,heal? & ,human ,s]vices1       
,education1 & ,relat$ ,ag5cies ( !      
,committee on ,appropriations ( ! ,h\se 
( ,repres5tatives & ! ,committee on     
,heal?1 ,education1 ,labor1 & ,p5sions &
 ! ,subcommittee on ,labor1 ,heal? &    
,human ,s]vices1 ,education1 & ,relat$  
,ag5cies ( ! ,committee on              
,appropriations ( ! ,s5ate1 a report t  

catalogs ! rese>* conduct$ or support$  
"u ?is section4  7#b7  ,cont5ts  ,ea*   
report "u p>agraph 7#a7 %all include--  
7,a7 id5tification ( ! in/itute1 c5t]1  
ag5cy1 (fice1 or entity involv$2  7,b7 a
 /atem5t ( :e!r ! rese>* is or 0 be+    
c>ri$ out directly by ! in/itute1 c5t]1 
ag5cy1 (fice1 or entity or by multiple  
in/itutes1 c5t]s1 ag5cies1 (fices1 or   
entities2 &  7,c7 id5tification ( any   
result+ real _w evid5ce t is or may be  
us$ = cl9ical rese>* & m$ical c>e =     
pati5ts ) ,d[n syndrome4  4