,i  #aad? ,,congress  #a/ ,session  ,h4 
,r4 #ahdi  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,april #af1 #bjae ,mr4
 ,royce 7= himself & ,mr4 ,himes7       
introduc$ ! foll[+ bill2 :i* 0 ref]r$ to
 ! ,committee on ,en]gy & ,comm]ce1 & 9 
addition to ! ,committee on ,ways &     
,means1 = a p]iod to be subsequ5tly     
det]m9$ by ! ,speak]1 9 ea* case =      
consid]ation ( su* provisions z fall )9 
! jurisdiction ( ! committee conc]n$  ,a
 ,,bill  ,to am5d ! ,public ,heal?      
,s]vice ,act to improve ! diagnosis &   
treatm5t ( h]$it>y hemorrhagic          
telangiectasia1 & = o!r purposes4  #a4  
,%ort title ,?is ,act may be cit$ z !   
,h]$it>y ,hemorrhagic ,telangiectasia   
,diagnosis & ,treatm5t ,act ( #bjae4    
#b4 ,f9d+s ,! ,congress f9ds z foll[s3  
7#a7 ,h]$it>y hemorrhagic telangiectasia
 7,,hht7 is a l>gely undiagnos$ or      
misdiagnos$ vascul> g5etic ble$+ disord]
 result+ 9 art]y-ve9 mal=mations        
7,a,v,ms7 :i* lead to prev5table        
cata/rophic & disabl+ consequ5ces4 ,,hht

 c cause sudd5 dea? at any age1 unless  
detect$ & treat$4 ,e>ly detection1      
scre5+1 & use ( readily available       
treatm5t c prev5t premature dea?s &     
long-t]m heal? complications result+ f  
,,hht4 ,a p]son ) ,,hht has ! t5d5cy to 
=m blood vessels t lack ! capill>ies    
betwe5 an art]y & ve94 ,,hht (t5 results
 9 spontane\s hemorrhage or /roke f bra9
 or lung ,a,v,ms4 ,9 addition to        
hemorrhagic /roke1 embolic /roke & bra9 
abscess occur 9 approximately #cj p]c5t 
( p]sons ) ,,hht art]y-ve9 mal=mations 9
 ! lung 7due to lack ( capill>ies betwe5
 ! art]ial & v5\s sy/ems :i* normally   
filt] out clots & bact]ia74  7#b7 ,"o 9 
#e1jjj ,am]ican *ildr5 & adults suff] f 
,,hht4  7#c7 ,/udies h f\nd an increase 
9 morbidity & mortality rates =         
individuals :o suff] f ,,hht4  7#d7 ,due
 to ! widespread lack ( k1 accurate     
diagnosis1 & appropriate int]v5tion1 #ij
 p]c5t ( ,,hht-affect$ families are at  
risk = prev5table1 life-?reat5+1 &      
disabl+ m$ical incid5ts su* z /roke4    

7#e7 ,e>ly detection1 scre5+1 & treatm5t
 c prev5t premature dea?s1 spontane\s   
hemorrhage1 hemorrhagic /roke1 embolic  
/roke1 bra9 abscess1 & o!r long-t]m     
heal? c>e complications result+ f ,,hht4
  7#f7 ,,hht is an important heal?      
condition ) s]i\s heal? consequ5ces :i* 
are am5able to e>ly id5tification &     
diagnosis ) suitable te/s1 & acceptable 
& available treatm5ts 9 e/abli%$        
treatm5t c5t]s4  7#g7 ,timely           
id5tification & managem5t ( ,,hht cases 
is an important public heal? objective  
because x w save lives1 prev5t          
disability1 & r$uce direct & indirect   
heal? c>e co/s4 ,a rec5t /udy f\nd t use
 ( a g5etic te/+ model = ,,hht diagnosis
 saves #i4i million 9 t scre5+ c be     
limit$ to ^? p]sons )9 ! family gr\ps :o
 actually h ! g5e defect1 lead+ to e>ly 
int]v5tion 9 ^? f\nd to h treatable     
,a,v,ms4  7#h7 ,)\t a new program = e>ly
 detection1 scre5+1 & treatm5t1 #ad1jjj 
*ildr5 & adults :o suff] f ,,hht 9 !    
population today w suff] premature dea? 

& disability4  #c4 ,purpose ,! purpose (
 ?is ,act is to create a f$]ally l$ &   
f9anc$ initiative = e>ly diagnosis &    
appropriate treatm5t ( h]$it>y          
hemorrhagic telangiectasia t w--  7#a7  
r$uce ! suff]+ ( families2  7#b7 prev5t 
premature dea? & disability2 &  7#c7 l[]
 heal? c>e co/s ?r\gh prov5 treatm5t    
int]v5tions4  #d4 ,c5t]s = disease      
control & prev5tion ,"p ,b ( title ,,iii
 ( ! ,public ,heal? ,s]vice ,act 7#db   
,u4,s4,c4 #bdc et seq47 is am5d$ by     
ins]t+ aft] section #cag,t ! foll[+3    
#cag,u4 ,h]$it>y hemorrhagic            
telangiectasia  7a7 ,9 g5]al ,) respect 
to h]$it>y hemorrhagic telangiectasia 79
 ?is section ref]r$ to z ,,hht71 !      
,director ( ! ,c5t]s = ,disease ,control
 & ,prev5tion 79 ?is section ref]r$ to z
 ! ,director7 %all c>ry out ! foll[+    
activities3  7#a7 ,! conduct (          
surveillance ( ! preval5ce & incid5ce ( 
,,hht z describ$ 9 subsection 7c74  7#b7
 ,! id5tification & conduct (           
inve/igations to fur!r develop & support

 guidel9es = diagnosis (1 & int]v5tion  
=1 ,,hht1 includ+ co/-b5efit /udies4    
7#c7 ,! developm5t ( a /&>diz$ survey & 
scre5+ tool on family hi/ory4  7#d7 ,!  
e/abli%m5t1 9 collaboration ) a volunt>y
 heal? organization repres5t+ ,,hht     
families1 ( an ,,hht res\rce c5t] )9 !  
,c5t]s = ,disease ,control & ,prev5tion 
to provide compreh5sive education on1 & 
dissem9ate in=mation ab\t1 ,,hht to     
heal? pr(essionals1 pati5ts1 indu/ry1 & 
! public4  7#e7 ,! conduct or support ( 
public aw>5ess programs 9 collaboration 
) m$ical1 g5etic1 & pr(essional         
organizations to improve ! education (  
heal? pr(essionals ab\t ,,hht4  7b7     
,collaborative approa*es ,! ,director   
%all c>ry out ?is section ?r\gh         
collaborative approa*es )9 ! ,national  
,c5t] on ,bir? ,defects & ,developm5tal 
,disabilities & ! ,division = ,he>t     
,disease & ,/roke ,prev5tion ( ! ,c5t]s 
= ,disease ,control & ,prev5tion =      
clott+ & ble$+ disord]s4  7c7 ,relat$   
activities ,9 c>ry+ out subsection 7a71 

! ,director %all-- 7#a7 designate &     
provide fund+ = a suffici5t numb] (     
,,hht ,treatm5t ,c5t]s ( ,excell5ce--   
7,a7 to collect data on ! preval5ce (1 &
 /roke incid5ce associat$ )1 ,,hht2 &   
7,b7 to improve pati5t access to        
in=mation1 diagnosis1 e>ly int]v5tion1 &
 treatm5t ( ,,hht2  7#b7 provide data   
collect$ "u p>agraph 7#a7 to ! ,paul    
,cov]dell ,national ,acute ,/roke       
,regi/ry to facilitate--  7,a7 analyses 
( ! natural hi/ory ( hemorrhagic &      
embolic /roke 9 ,,hht2 &  7,b7          
developm5t ( scre5+ & art]y-ve9         
mal=mation treatm5t guidel9es specific  
to prev5tion ( complications f ,,hht2 & 
7#c7 develop & implem5t programs1 t>get$
 = physicians & heal? c>e pr(essional   
gr\ps likely to be access$ by families )
 ,,hht1 to increase ,,hht diagnosis &   
treatm5t rates ?r\gh !--  7,a7          
e/abli%m5t ( a p>tn]%ip ) ,,hht         
,treatm5t ,c5t]s ( ,excell5ce designat$ 
"u p>agraph 7#a7 ?r\gh ! creation ( a   
database ( pati5ts assess$ at su* ,,hht 

,treatm5t ,c5t]s ( ,excell5ce 7includ+ )
 respect to ph5otype in=mation1 g5otype 
in=mation1 transfusion dep5d5ce1 &      
radiological f9d+s72 &  7,b7 inclusion (
 o!r m$ical provid]s :o treat ,,hht     
pati5ts4  7d7 ,eligibility = designation
 z an ,,hht treatm5t c5t] ( excell5ce ,9
 c>ry+ out subsection 7c77#a71 !        
,director may designate1 z an ,,hht     
,treatm5t ,c5t] ( ,excell5ce1 only      
academic heal? c5t]s demon/rat$ to h ea*
 ( ! foll[+3  7#a7 ,a team ( m$ical     
exp]ts capable ( provid+ compreh5sive   
evaluation1 treatm5t1 & education to    
individuals ) kn[n or suspect$ ,,hht &  
_! heal? c>e provid]s4  7#b7            
,adm9i/rative /aff ) suffici5t k to     
respond to pati5t inquiries & coord9ate 
pati5t c>e 9 a timely fa%ion4  4  #e4   
,additional heal? & human s]vices       
activities ,) respect to h]$it>y        
hemorrhagic telangiectasia 79 ?is       
section ref]r$ to z ,,hht71 ! ,secret>y 
( ,heal? & ,human ,s]vices1 act+ ?r\gh !
 ,adm9i/rator ( ! ,c5t]s = ,m$ic>e      

,m$icaid ,s]vices1 %all aw>d grants on a
 competitive basis--  7#a7 = an analysis
 by grantees ( ! ,m$ic>e ,provid]       
,analysis & ,review 7,,m$p>7 file to    
develop prelim9>y e/imates f ! ,m$ic>e  
program "u title ,,xviii ( ! ,social    
,security ,act = prev5table co/s (      
annual heal? c>e exp5ditures includ+    
items1 s]vices1 & treatm5ts associat$ ) 
untreat$ ,,hht furni%$ to individuals ) 
,,hht1 z well z socioeconomic co/s su* z
 disability exp5ditures associat$ )     
prev5table m$ical ev5ts 9 ?is           
population1 :o are entitl$ to b5efits "u
 "p ,a ( title ,,xviii ( ! ,social      
,security ,act or enroll$ "u "p ,b ( su*
 title2 &  7#b7 to make recomm5dations  
reg>d+ an enhanc$ data collection       
protocol to p]mit a m precise           
det]m9ation ( ! total co/s describ$ 9   
p>agraph 7#a74  #f4 ,national in/itutes 
( heal? ,"p ,b ( title ,,iv ( ! ,public 
,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bhd 
et seq47 is am5d$ by add+ at ! end !    
foll[+3  #dji,k4 ,h]$it>y hemorrhagic   

telangiectasia  7a7 ,,hht initiative    
7#a7 ,e/abli%m5t ,! ,secret>y %all      
e/abli% & implem5t an ,,hht initiative  
to assi/ 9 coord9at+ activities to      
improve e>ly detection1 scre5+1 &       
treatm5t ( p :o suff] f ,,hht4 ,su*     
initiative %all focus on--  7,a7 advanc+
 rese>* on ! causes1 diagnosis1 &       
treatm5t ( ,,hht1 includ+ ?r\gh !       
conduct or support ( su* rese>*2 &  7,b7
 increas+ physician & public aw>5ess (  
,,hht4  7#b7 ,consultation ,9 c>ry+ out 
?is subsection1 ! ,secret>y %all consult
 ) ! ,director ( ! ,national ,in/itutes 
( ,heal? & ! ,director ( ! ,c5t]s =     
,disease ,control & ,prev5tion4  7b7    
,,hht coord9at+ committee  7#a7         
,e/abli%m5t ,n lat] ?an #fj days aft] ! 
date ( enactm5t ( ?is section1 !        
,secret>y1 9 consultation ) ! ,director 
( ! ,national ,in/itutes ( ,heal?1 %all 
e/abli% a committee to be kn[n z ! ,,hht
 ,coord9at+ ,committee4  7#b7 ,memb]%ip 
7,a7 ,9 g5]al ,! memb]s ( ! ,committee  
%all be appo9t$ by ! ,secret>y1 9       

consultation ) ! ,director ( ! ,national
 ,in/itutes ( ,heal?1 & %all consi/ (   
#ab individuals :o are exp]ts 9 ,,hht or
 art]iov5\s mal=mation 7,,avm7 z foll[s3
  7i7 ,f\r repres5tatives ( ,,hht       
,treatm5t ,c5t]s ( ,excell5ce designat$ 
"u section #cag,u7c77#a74  7ii7 ,f\r    
exp]ts 9 vascul>1 molecul>1 or basic    
sci5ce4  7iii7 ,f\r repres5tatives ( !  
,national ,in/itutes ( ,heal?4  7,b7    
,*air ,! ,secret>y %all designate !     
,*air ( ! ,committee f among its memb]s4
  7,c7 ,int]im memb]s ,9 place ( ! #d   
memb]s o!rwise requir$ to be appo9t$ "u 
subp>agraph 7,a77i71 ! ,secret>y may    
appo9t #d exp]ts 9 vascul>1 molecul>1 or
 basic sci5ce to s]ve z memb]s ( !      
,committee dur+ ! p]iod prec$+          
designation & e/abli%m5t ( ,,hht        
,treatm5t ,c5t]s ( ,excell5ce "u section
 #cag,u4  7,d7 ,publication ( names ,n  
lat] ?an #cj days aft] ! e/abli%m5t ( ! 
,committee1 ! ,secret>y %all publi% !   
names ( ! ,*air & memb]s ( ! ,committee 
on ! public ,web site ( ! ,dep>tm5t (   

,heal? & ,human ,s]vices4  7,e7 ,t]ms ,!
 memb]s ( ! ,committee %all ea* be      
appo9t$ = a #c-ye> t]m &1 at ! end ( ea*
 su* t]m1 may be reappo9t$4  7,f7       
,vacancies ,a vacancy on ! ,committee   
%all be fill$ by ! ,secret>y 9 ! same   
mann] 9 :i* ! orig9al appo9tm5t 0 made4 
7#c7 ,responsibilities ,! ,committee    
%all develop & coord9ate implem5tation (
 a plan to advance rese>* & und]/&+ (   
,,hht by--  7,a7 conduct+ or support+   
basic1 translational1 & cl9ical rese>*  
on ,,hht across ! relevant national     
rese>* in/itutes1 national c5t]s1 &     
(fices ( ! ,national ,in/itutes (       
,heal?1 includ+ ! ,national ,he>t1      
,lung1 & ,blood ,in/itute2 ! ,national  
,in/itute ( ,neurological ,disord]s &   
,/roke2 ! ,national ,in/itutes (        
,diabetes & ,dige/ive & ,kidney         
,diseases2 ! ,eunice ,k5n$y ,%riv]      
,national ,in/itute ( ,*ild ,heal? &    
,human ,developm5t2 ! ,national ,canc]  
,in/itute2 ! ,national ,human ,g5ome    
,rese>* ,in/itute2 ! ,national ,c5t] =  

,advanc+ ,translational ,sci5ces        
7includ+ ! ,(fice ( ,r>e ,diseases      
,rese>*72 & ! ,national ,in/itute (     
,biom$ical ,imag+ & ,bio5g9e]+2 &  7,b7 
conduct+ evaluations & mak+             
recomm5dations to ! ,secret>y1 !        
,director ( ! ,national ,in/itutes (    
,heal?1 & ! ,director ( ! ,national     
,canc] ,in/itute reg>d+ ! prioritization
 & aw>d ( ,national ,in/itutes ( ,heal? 
rese>* grants relat+ to ,,hht1 includ+ )
 respect to grants =--  7i7 exp&+       
und]/&+ ( ,,hht ?r\gh basic1            
translational1 & cl9ical rese>* on !    
cause1 diagnosis1 prev5tion1 control1 & 
treatm5t ( ,,hht2  7ii7 tra9+ programs  
on ,,hht = sci5ti/s & heal?             
pr(essionals2 &  7iii7 ,,hht g5etic te/+
 rese>* to improve ! accuracy ( g5etic  
te/+4  7c7 ,def9itions ,9 ?is section3  
7#a7 ,! t]m ,committee means ! ,,hht    
,coord9at+ ,committee e/abli%$ "u       
subsection 7b74  7#b7 ,! t]m ,,hht means
 h]$it>y hemorrhagic telangiectasia4  4 
#g4 ,au?orization ( appropriations  7a7 

,9 g5]al ,to c>ry out section #cag,u ( !
 ,public ,heal? ,s]vice ,act z add$ by  
section #d ( ?is ,act1 section #e ( ?is 
,act1 & section #dji,k ( ! ,public      
,heal? ,s]vice ,act z add$ by section #f
 ( ?is ,act1 !re is au?oriz$ to be      
appropriat$ #e1jjj1jjj = ea* ( fiscal   
ye>s #bjaf ?r\gh #bjbj4  7b7 ,res\rce   
c5t] ,( ! am\nt au?oriz$ to be          
appropriat$ "u subsection 7a7 = ea* (   
fiscal ye>s #bjaf ?r\gh #bjbj1          
#a1jjj1jjj %all be = c>ry+ out section  
#cag,u7a77#d7 ( ! ,public ,heal? ,s]vice
 ,act 7provid+ = an ,,hht res\rce c5t]71
 z add$ by section #d ( ?is ,act4  7c7  
,(fset ,!re is au?oriz$ to be           
appropriat$ to ! ,dep>tm5t ( ,heal? &   
,human ,s]vices = sal>ies & exp5ses ( ! 
,dep>tm5t = ea* ( fiscal ye>s #bjaf     
?r\gh #bjbj ! am\nt t is #e1jjj1jjj less
 ?an ! am\nt appropriat$ = su* sal>ies &
 exp5ses = fiscal ye> #bjae4