,i  #aac? ,,congress  #a/ ,session  ,h4 
,r4 #aeia  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,april #ag1 #bjac ,mr4
 ,c>t] 7= himself1 ,mr4 ,burgess1 ,ms4  
,spei]1 ,mr4 ,k+ ( ,new ,york1 ,mr4     
,mc,caul1 & ,mr4 ,rangel7 introduc$ !   
foll[+ bill2 :i* 0 ref]r$ to !          
,committee on ,en]gy & ,comm]ce  ,a     
,,bill  ,to am5d ! ,public ,heal?       
,s]vice ,act to provide = ! e/abli%m5t &
 ma9t5ance ( an undiagnos$ diseases     
network1 & = o!r purposes4  #a4 ,%ort   
title ,?is ,act may be cit$ z ! ,*>les  
,augu/ ,long ,undiagnos$ ,diseases      
,rese>* & ,collaboration ,network ,act (
 #bjac or ! ,,cal ,undiagnos$ ,diseases 
,rese>* & ,collaboration ,network ,act (
 #bjac 4  #b4 ,,cal ,network (          
undiagnos$ diseases ,title ,,iii ( !    
,public ,heal? ,s]vice ,act 7#db        
,u4,s4,c4 #bda et seq47 is am5d$ by     
ins]t+ aft] section #cag,t ! foll[+3    
#cag,u4 ,! ,national ,,cal ,network (   
,undiagnos$ ,diseases  7a7 ,e/abli%m5t  
,! ,secret>y1 act+ ?r\gh ! ,director (  

,,nih1 %all e/abli% & ma9ta9 an         
undiagnos$ diseases pati5t network 79   
?is section ref]r$ to z ! ,,cal         
,network74  7b7 ,purposes ,! purposes ( 
! ,,cal ,network %all be to--  7#a7     
provide physicians :o are h&l+ cases (  
undiagnos$ diseases ) a means1 consi/5t 
) applicable privacy laws1 includ+      
,,hipaa privacy & security law 7z def9$ 
9 section #cjji7;a77#b771 to se>* =     
simil> cases & to network & collaborate 
) ! physicians h&l+ su* simil> cases 9  
ord] to f9d a diagnosis & to improve    
pati5t c>e & outcomes2  7#b7 bett]      
enable & exam9e cross-disease rese>*    
:]eby cases ( undiagnos$ diseases c be  
cross-ref]5c$ aga9/ attributes ( common 
diseases & r>e diseases to assi/ 9 !    
r5d]+ ( a diagnosis2 elucidate          
commonalities2 id5tify atypical         
pres5tations1 r>e subgr\ps1 simil>      
f9d+s2 & id5tify pot5tial treatm5ts2    
7#c7 bett] describe ! types & preval5ce 
( cases ( undiagnos$ diseases 9 ! ,unit$
 ,/ates2  7#d7 make necess>y data       

available to elucidate appropriate      
factors 7su* z g5etic1 environm5tal1 &  
occupational factors7 t may be associat$
 ) ! v>i\s types ( cases ( undiagnos$   
diseases report$ by individuals specifi$
 by ! ,director ( ,,nih2  7#e7 bett]    
outl9e key demographic factors 7su* z   
age1 race or e?nicity1 g5d]1 sex1       
geographic location1 & family m$ical    
hi/ory7 ( individuals :o are undiagnos$2
  7#f7 provide su* data necess>y to     
bett] und]/& ! l5g? ( "t = a diagnoses  
to be r5d]$ 9 cases ( undiagnos$        
diseases & to id5tify b>ri]s to         
diagnoses & reasons = misdiagnosis (    
diseases2 &  7#g7 provide su* in=mation 
necess>y to det]m9e1 9 ord] to improve  
access ( individuals ) undiagnos$       
diseases ?r\gh\t ! ,unit$ ,/ates        
7includ+ ^? ) sev]e illnesses :i* limit 
or re/rict travel7 to programs simil> to
 ! ,undiagnos$ ,disease ,program        
conduct$ at ! ,national ,in/itutes (    
,heal?1 if ! ne$s & numb] ( su*         
individuals support--  7,a7 ! expansion 

( su* ,undiagnos$ ,disease ,program1 z 9
 exi/5ce z ( ! date ( ! enactm5t ( ?is  
section1 to include ! e/abli%m5t (      
additional undiagnos$ diseases programs 
( l scope & nature at o!r locations     
?r\gh\t ! ,unit$ ,/ates2 &  7,b7 !      
e/abli%m5t by entities o!r ?an !        
,national ,in/itutes ( ,heal? ( sep>ate 
undiagnos$ disease programs ( l scope & 
nature to ! ,undiagnos$ ,disease        
,program at locations ?r\gh\t ! ,unit$  
,/ates "u ! guidance ( & ?r\gh grants   
provid$ by & ?r\gh su* ,undiagnos$      
,diseases ,program4  7c7 ,cont5t ( !    
,,cal ,network ,! ,secret>y %all include
 9 ! ,,cal ,network su* in=mation       
respect+ undiagnos$ diseases z !        
,secret>y deems appropriate = ! purposes
 describ$ 9 subsection 7b7 & o!r        
purposes to facilitate ! e>ly           
recognition1 treatm5t1 cure1 & control (
 su* diseases4  7d7 ,availability  7#a7 
,design requirem5ts ,subject to p>agraph
 7#b71 = ! purposes describ$ 9          
subsection 7c7 & consi/5t ) applicable  

privacy laws1 includ+ ,,hipaa privacy & 
security law 7z def9$ 9 section         
#cjji7;a77#b771 ! ,secret>y %all ensure 
t ! ,,cal ,network is design$ 9 su* a   
mann] z to--  7,a7 make ! in=mation 9 ! 
,,cal ,network available to appropriate 
heal? c>e pr(essionals1 pati5ts1 & o!r  
qualifi$ individuals & organizations1 z 
det]m9$ by ! ,secret>y1 :o are regi/]$  
to access su* network 9 accordance ) su*
 process & requirem5ts z specifi$ by !  
,secret>y2  7,b7 make epidemiological & 
o!r types ( in=mation obta9$ ?r\gh !    
,,cal ,network available to ,f$]al      
ag5cies & heal?-relat$ ag5cies2  7,c7   
provide = diff]5t levels & types (      
access to su* network to be grant$ bas$ 
on ! circum/ances & individuals involv$2
 &  7,d7 all[ = an individual to h only 
! level & type ( access to ! network s  
grant$4  7#b7 ,in=mation :i* may n be   
publically disclos$ ,! design "u        
p>agraph 7#a7 %all ensure t ! foll[+    
in=mation is n publicly disclos$3  7,a7 
,individually id5tifiable in=mation4    

7,b7 ,trade secrets or comm]cial or     
f9ancial in=mation obta9$ f a p]son &   
privileg$ or confid5tial1 z provid$ 9   
section #eeb7;b77#d7 ( title #e1 ,unit$ 
,/ates ,code4  7e7 ,grants ,! ,secret>y1
 act+ ?r\gh ! ,director ( ,,nih1 may    
aw>d grants to1 & ent] into contracts & 
coop]ative agreem5ts )1 public or       
private nonpr(it entities =--  7#a7 !   
collection1 analysis1 & report+ ( data  
on cases ( undiagnos$ diseases & o!r    
disord]s t c (t5 g undiagnos$ or be     
misdiagnos$ z o!r diseases or disord]s2 
&  7#b7 ! e/abli%m5t ( sep>ate          
undiagnos$ disease programs describ$ 9  
subsection 7b77#g77;,b74  7f7           
,implem5tation s*$ule ,9 c>ry+ out ?is  
section1 ! ,secret>y %all--  7#a7 n lat]
 ?an #a ye> aft] ! date ( ! enactm5t (  
?is section1 complete any /udy1 rese>*1 
& developm5t necess>y to implem5t !     
,,cal ,network2 &  7#b7 complete !      
implem5tation ( ! ,,cal ,network su* t x
 is fully op]ational by n lat] ?an      
,septemb] #cj1 #bjae4  7g7 ,undiagnos$  

diseases def9$ ,= purposes ( ?is        
section1 ! t]m undiagnos$ disease means 
a m$ically unexpla9$ *ronic             
multi-symptom disease t--  7#a7 causes !
 decl9e (1 limitations 91 or cessation (
 a p]son's developm5tal /atus1          
functional /atus1 quality ( life1 or any
 comb9ation !re(2  7#b7 has n be5       
diagnos$ by a m$ical speciali/ 9 a      
t]ti>y m$ical c5t]2  7#c7 is def9$ by a 
clu/] ( signs or symptoms2 :i* by       
hi/ory1 physical exam9ation1 &          
laboratory te/s _c be attribut$ to any  
kn[n cl9ical diagnosis2  7#d7 is )\t    
conclusive pa?ophysiology or etiology2  
7#e7 is *>act]iz$ by ov]lapp+ symptoms &
 signs2 or  7#f7 exhibits an inconsi/5t 
demon/ration ( laboratory abnormalities4
  7h7 ,au?orization ( appropriations    
7#a7 ,9 g5]al ,to c>ry out ?is section1 
!re are au?oriz$ to be appropriat$      
#e1jjj1jjj = ! p]iod ( fiscal ye>s #bjad
 ?r\gh #bjai4  7#b7 ,(fset ,to (fset    
am\nts appropriat$ pursuant to !        
au?orization ( appropriations 9 p>agraph

 7#a71 ! ,secret>y %all r$uce funds t   
w\ld o!rwise be obligat$ & exp5d$ "u !  
acc\nt head+ ,national ,in/itutes (     
,heal?-,(fice ( ! ,director by          
#e1jjj1jjj = ! p]iod ( fiscal ye>s #bjad
 ?r\gh #bjai4  4