,i  #aaf? ,,congress  #a/ ,session  ,h4 
,r4 #dbbh  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,septemb] #f1         
#bjai,mr4 ,c>son ( ,indiana 7= himself1 
,mr4 ,hudson1 ,ms4 ,br[nley ( ,cali=nia1
 ,mr4 ,buc%on1 ,mr4 ,de,fazio1 ,mr4     
,deut*1 ,mr4 ,fitzpatrick1 ,ms4 ,jackson
 ,lee1 ,mr4 ,lujn1 ,mrs4 ,c>olyn ,b4    
,maloney ( ,new ,york1 ,ms4 ,moore1     
,mrs4 ,murphy1 ,ms4 ,norton1 ,mr4       
,rask91 ,mr4 ,r\da1 ,mr4 ,suozzi1 &     
,mrs4 ,walorski7 introduc$ ! foll[+     
bill2 :i* 0 ref]r$ to ! ,committee on   
,en]gy & ,comm]ce  ,a ,,bill  ,to exp& &
 improve ! programs & activities ( !    
,dep>tm5t ( ,heal? & ,human ,s]vices =  
aw>5ess1 education1 rese>*1             
surveillance1 diagnosis1 & treatm5t     
conc]n+ r>e diseases & conditions4  #a4 
,%ort title ,?is ,act may be cit$ z !   
,r>e disease ,advancem5t1 surveillance  
,rese>*1 & ,education ,act ( #bjai or ! 
,,r>e ,act ( #bjai4  #b4 ,,nih r>e      
disease regional c5t]s ( excell5ce      
,p>agraph 7#a7 ( section #djb;,a7a7 ( ! 

,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bhb;a7a77 is am5d$ by add+ at
 ! end ! foll[+3 ,9 addition to ! am\nts
 au?oriz$ to be appropriat$ by ! prec$+ 
s5t5ce1 !re are au?oriz$ to be          
appropriat$ su* sums z may be necess>y =
 ea* ( fiscal ye>s #bjbj ?r\gh #bjbd =  
c>ry+ out section #dha;,a 7relat+ to r>e
 disease regional c5t]s ( excell5ce744  
#c4 ,,cdc ,surveillance ( ,r>e ,diseases
 & ,conditions ,title ,,iii ( ! ,public 
,heal? ,s]vice ,act is am5d$ by ins]t+  
aft] section #cag,t ( su* ,act 7#db     
,u4,s4,c4 #bdg;b-#bb7 ! foll[+3  #cag,u4
 ,,cdc surveillance ( r>e diseases &    
conditions  7a7 ,9 g5]al ,! ,secret>y   
may1 z appropriate-- 7#a7 enhance & exp&
 infra/ructure & activities to track !  
epidemiology ( up to #d r>e diseases &  
conditions select$ "u subsection        
7c77#a72 &  7#b7 incorporate in=mation  
obta9$ ?r\gh su* activities into an     
integrat$ surveillance sy/em to be kn[n 
z ! ,national ,r>e ,disease or          
,condition ,surveillance ,sy/em4  7b7   

,rese>* ,! ,secret>y %all ensure t !    
,national ,r>e ,disease or ,condition   
,surveillance ,sy/em is design$ 9 a     
mann] t provides in=mation t facilitates
 fur!r rese>* on r>e diseases &         
conditions4  7c7 ,cont5t ,9 c>ry+ out   
subsection 7a71 ! ,secret>y-- 7#a7 %all 
select up to #d r>e diseases &          
conditions t are det]m9$ by ! ,secret>y 
to h--  7,a7 a high rate ( mortality or 
morbidity2 or  7,b7 pot5tial = mean+ful 
rese>* & treatm5t2  7#b7 %all provide = 
! collection & /orage ( in=mation on !  
incid5ce & preval5ce ( su* r>e diseases 
& conditions 9 ! ,unit$ ,/ates2  7#c7 to
 ! ext5t practicable1 %all provide = !  
collection & /orage ( o!r available     
in=mation on su* r>e diseases &         
conditions1 includ+ in=mation relat$ to 
p]sons liv+ ) su* a r>e disease or      
condition :o *oose to p>ticipate 9      
surveillance activities1 & includ+      
in=mation on--  7,a7 demographics1 su* z
 age1 race1 e?nicity1 sex1 geographic   
location1 family hi/ory1 & o!r          

in=mation1 z appropriate2  7,b7 risk    
factors t may be associat$ ) ! r>e      
disease or condition1 su* z g5etic &    
environm5tal risk factors & o!r         
in=mation1 z appropriate2 &  7,c7       
diagnosis & progression m>k]s2  7#d7 to 
! ext5t practicable1 %all provide = !   
collection & /orage ( in=mation relevant
 to analysis on su* r>e diseases &      
conditions1 su* z in=mation conc]n+--   
7,a7 ! natural hi/ory ( ! diseases &    
conditions2  7,b7 ! prev5tion ( !       
disease or condition1 includ+ second>y  
diseases & conditions2  7,c7 !          
detection1 managem5t1 & treatm5t        
approa*es = ! diseases & conditions2 &  
7,d7 ! developm5t ( outcomes measures2 &
  7#e7 may address issues id5tifi$ dur+ 
! consultation process "u subsection    
7d74  7d7 ,consultation ,9 c>ry+ out ?is
 section1 ! ,secret>y %all consult )    
individuals ) appropriate exp]tise1 :i* 
may include--  7#a7 epidemiologi/s )    
exp]i5ce 9 disease surveillance2  7#b7  
repres5tatives ( national volunt>y heal?

 associations t--  7,a7 focus on r>e    
diseases or conditions2 &  7,b7 h       
demon/rat$ exp]i5ce 9 rese>*1 c>e1 or   
pati5t s]vices2  7#c7 heal? in=mation   
te*nology exp]ts or o!r in=mation       
managem5t speciali/s2  7#d7 cl9icians ) 
exp]tise 9 r>e diseases or conditions2  
7#e7 rese>* sci5ti/s ) exp]tise 9 r>e   
diseases or conditions1 or exp]i5ce     
conduct+ translational rese>* or utiliz+
 surveillance sy/ems = sci5tific rese>* 
purposes2 &  7#f7 pati5ts & c>egiv]s (  
pati5ts ) r>e diseases or conditions4   
7e7 ,grants ,! ,secret>y may aw>d grants
 to1 or ent] into contracts or          
coop]ative agreem5ts )1 public or       
private nonpr(it entities to c>ry out   
activities "u ?is section4  7f7         
,coord9ation ) o!r ,f$]al1 ,/ate1 &     
local ag5cies ,subject to subsection    
7h71 ! ,secret>y %all-- 7#a7 make       
in=mation & analysis 9 ! ,national ,r>e 
,disease or ,condition ,surveillance    
,sy/em available1 z appropriate--  7,a7 
to ,f$]al dep>tm5ts & ag5cies1 su* z !  

,national ,in/itutes ( ,heal? & !       
,dep>tm5t ( ,vet]ans ,affairs2 &  7,b7  
to ,/ate & local ag5cies2 &  7#b7       
id5tify1 build ^u1 lev]age1 & coord9ate 
among exi/+ data & surveillance sy/ems1 
surveys1 regi/ries1 & o!r ,f$]al public 
heal? infra/ructure1 :]ev] practicable4 
7g7 ,public access ,subject to          
subsection 7h71 ! ,secret>y %all ensure 
t in=mation & analysis 9 ! ,national    
,r>e ,disease or ,conditions            
,surveillance ,sy/em are available1 z   
appropriate1 to ! public1 includ+       
rese>*]s4  7h7 ,privacy ,! ,secret>y    
%all ensure t in=mation & analysis 9 !  
,national ,r>e ,disease or ,condition   
,surveillance ,sy/em are made available 
only to ! ext5t p]mitt$ by applicable   
,f$]al & ,/ate law1 & 9 a mann] t       
protects p]sonal privacy1 to ! ext5t    
requir$ by applicable ,f$]al & ,/ate    
privacy law1 at a m9imum4  7i7          
,supplem5t n supplant ,! activities "u  
?is section may supplem5t1 b %all n     
supplant1 any activities ) respect to   

sp9a bifida1 muscul> dy/rophy1 or       
fragile ,x syndrome t are ongo+ z ( !   
date ( enactm5t ( ?is section4  7j7     
,reports  7#a7 ,report on in=mation &   
analyses ,n lat] ?an #b ye>s aft] ! date
 on :i* any sy/em is e/abli%$ "u ?is    
section1 ! ,secret>y %all submit an     
int]im report to ! ,committee on ,heal?1
 ,education1 ,labor1 & ,p5sions ( !     
,s5ate & ! ,committee on ,en]gy &       
,comm]ce ( ! ,h\se ( ,repres5tatives    
reg>d+ aggregate in=mation collect$     
pursuant to ?is section &               
epidemiological analyses1 z appropriate4
 ,su* report %all be po/$ on ! ,int]net 
website ( ! ,dep>tm5t ( ,heal? & ,human 
,s]vices & %all be updat$ bi5nially4    
7#b7 ,implem5tation report ,n lat] ?an  
#d ye>s aft] ! date ( ! enactm5t ( ?is  
section1 ! ,secret>y %all submit a      
report to ! ,congress conc]n+ !         
implem5tation ( ?is section4 ,su* report
 %all include in=mation on--  7,a7 !    
developm5t & ma9t5ance ( ! ,national    
,r>e ,disease or ,condition             

,surveillance ,sy/em2  7,b7 ! type (    
in=mation collect$ & /or$ 9 !           
surveillance sy/em2  7,c7 ! use &       
availability ( su* in=mation1 includ+   
guidel9es = su* use2 &  7,d7 ! use &    
coord9ation ( databases t collect or    
ma9ta9 in=mation on r>e diseases or     
conditions4  7k7 ,def9itions ,9 ?is     
section3 7#a7 ,national volunt>y heal?  
association ,! t]m national volunt>y    
heal? association means a national      
nonpr(it organization ) *apt]s1 o!r     
affiliat$ organizations1 or networks 9  
,/ates ?r\gh\t ! ,unit$ ,/ates )        
exp]i5ce s]v+ ! population ( individuals
 ) a r>e disease or condition & h       
demon/rat$ exp]i5ce 9 r>e disease or    
condition rese>*1 c>e1 & pati5t s]vices4
  7#b7 ,r>e ,! t]m r>e1 ) respect to a  
disease or condition1 means hav+ a      
preval5ce ( few] ?an #bjj1jjj           
individuals 9 ! ,unit$ ,/ates4  7l7     
,au?orization ( appropriations ,to c>ry 
out ?is section1 !re are au?oriz$ to be 
appropriat$ #aj1jjj1jjj = ea* ( fiscal  

ye>s #bjbj ?r\gh #bjbe4  4  #d4         
,increas+ heal? pr(essionals' aw>5ess ( 
r>e diseases  7a7 ,9 g5]al ,! ,director 
( ! ,ag5cy = ,heal?c>e ,rese>* &        
,quality %all exp& & int5sify !         
activities ( ! ,ag5cy to increase !     
aw>5ess & k ( heal? c>e provid]s ab\t   
r>e diseases & conditions4  7b7         
,def9ition ,9 ?is section1 ! t]m r>e    
diseases & conditions1 ) respect to a   
disease or condition1 means hav+ a      
preval5ce ( few] ?an #bjj1jjj           
individuals 9 ! ,unit$ ,/ates4  #e4     
,report  7a7 ,9 g5]al ,! ,secret>y (    
,heal? & ,human ,s]vices %all seek to   
ent] into an arrangem5t ) ! ,national   
,academies 7or ano!r appropriate entity 
if ! ,national ,academies decl9e7 to    
update & republi%1 by n lat] ?an #c ye>s
 aft] ! date ( enactm5t ( ?is ,act1 !   
#bjaj report ( ! ,national ,academies   
entitl$ ,r>e ,diseases & ,orphan        
,products3 ,accel]at+ ,rese>* &         
,developm5t4  7b7 ,au?orization (       
appropriations ,to c>ry out ?is section1

 !re is au?oriz$ to be appropriat$      
#a1jjj1jjj4