,,ii  #aac? ,,congress  #a/ ,session    
,s4 #ijh  ,,9 ,,! ,,s5ate ,,( ,,!       
,,unit$ ,,/ates  ,may #h1 #bjac ,mr4    
,johnson ( ,s\? ,dakota 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 improve
 ! diagnosis & treatm5t ( h]$it>y       
hemorrhagic telangiectasia1 & = o!r     
purposes4  #a4 ,%ort title ,?is ,act may
 be cit$ z ! ,h]$it>y ,hemorrhagic      
,telangiectasia ,diagnosis & ,treatm5t  
,act ( #bjac4  #b4 ,f9d+s ,! ,congress  
f9ds z foll[s3  7#a7 ,h]$it>y           
hemorrhagic telangiectasia 7ref]r$ to 9 
?is section z ,,hht7 is a l>gely        
undiagnos$ or misdiagnos$ vascul> g5etic
 ble$+ disord] result+ 9 art]y-ve9      
mal=mations 7ref]r$ to 9 ?is section z  
,a,v,ms71 :i* lead to prev5table1       
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 
( individuals ) ,,hht ,a,v,ms 9 ! lung  
7due to lack ( capill>ies betwe5 !      
art]ial & v5\s sy/ems t 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 = prev5table life-?reat5+ & 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$uce direct & indirect   
heal? c>e co/s exp5ditures4 ,a rec5t    
/udy has f\nd use ( a g5etic te/+ model 
= ,,hht diagnosis saves #i1ijj1jjj if   
scre5+ is limit$ to individuals )9 !    
family gr\ps t h ! g5e defect1 lead+ to 
e>ly int]v5tion 9 individuals 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]$it>y hemorrhagic telangiectasia t w
 result 9 ! r$uction ( ! suff]+ (       
families1 prev5t premature dea? &       
disability1 & l[] heal? c>e co/s ?r\gh  
prov5 treatm5t int]v5tions4  #d4        
,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$+          
designation & e/abli%m5t ( ,,hht        
,treatm5t ,c5t]s ( ,excell5ce "u section
 #cag,u4  7,d7 ,publication ( names ,n  
lat] ?an #cj days aft] ! e/abli%m5t ( ! 
,committee1 ! ,secret>y %all publi% !   
names ( ! ,*air & memb]s ( ! ,committee 
on ! ,website ( ! ,dep>tm5t ( ,heal? &  
,human ,s]vices4  7,e7 ,t]ms ,! memb]s (
 ! ,committee %all ea* be appo9t$ = 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 & ! ,(fice (
 ,r>e ,diseases2 &  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]$it>y hemorrhagic telangiectasia4  4 
#e4 ,c5t]s = disease control & prev5tion
 ,"p ,b ( title ,,iii ( ! ,public ,heal?
 ,s]vice ,act is am5d$ by ins]t+ aft]   
section #cag,t 7#db ,u4,s4,c4           
#bdg;b-#bb7 ! 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 ( population scre5+ 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$ical1 g5etic1 & pr(essional         
organizations to improve ! education (  
heal? pr(essionals ab\t ,,hht4  7b7     
,collaborative approa*es ,! ,director   
%all c>ry out ?is section ?r\gh         
collaborative approa*es )9 ! ,national  
,c5t] on ,bir? ,defects & ,developm5tal 
,disabilities & ! ,division = ,he>t     
,disease & ,/roke ,prev5tion ( ! ,c5t]s 
= ,disease ,control & ,prev5tion )      
respect to clott+ & ble$+ disord]s4  7c7
 ,population scre5+ ,9 c>ry+ out        
population scre5+ "u subsection 7a77#a71
 ! ,director %all--  7#a7 designate &   
provide fund+ = a suffici5t numb] (     
,,hht ,treatm5t ,c5t]s ( ,excell5ce to  
improve pati5t access to in=mation1     

treatm5t1 & c>e by ,,hht exp]ts2  7#b7  
conduct surveillance ?r\gh a population 
/udy1 supplem5t$ by s5t9el heal? c>e    
provid] or c5t] surveillance1 & by      
adm9i/rative database analyses1 z       
useful1 to accurately id5tify--  7,a7 ! 
preval5ce ( ,,hht2 &  7,b7 ! preval5ce (
 hemorrhagic & embolic /roke & bra9     
abscess1 result+ f ,,hht2  7#c7 include 
,,hht scre5+ que/ions 9 ! ,behavioral   
,risk ,factor ,surveillance ,sy/em      
survey conduct$ by ! ,c5t]s = ,disease  
,control & ,prev5tion 9 ord] to scre5 a 
broad] population & m accurately det]m9e
 ! preval5ce ( ,,hht2  7#d7 provide data
 collect$ "u p>agraph 7#b77;,b7 to !    
,paul ,cov]dell ,national ,acute ,/roke 
,regi/ry1 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#e7 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 integration (
 su* database )--  7i7 ! univ]sal data  
collection sy/em us$ by ! ,c5t]s =      
monitor+ hemophilia ) ! blood disord]s2 
&  7ii7 ! ,paul ,cov]dell ,national     
,acute ,/roke ,regi/ry2 &  7,c7         
inclusion ( o!r m$ical provid]s :o treat
 ,,hht pati5ts2 &  7#f7 use exi/+       
adm9i/rative databases on non-,,hht     
,treatm5t ,c5t] ( ,excell5ce pati5ts--  
7,a7 to le>n ab\t ! natural hi/ory (    
,,hht & ! efficacy ( v>i\s treatm5t     
modalities2 &  7,b7 to bett] in=m &     
develop scre5+ & treatm5t guidel9es     
associat$ ) improvem5t 9 heal? c>e      

outcomes1 & rese>* priorities relevant  
to ,,hht4  7d7 ,eligibility =           
designation z ,,hht ,treatm5t ,c5t] (   
,excell5ce ,9 c>ry+ out subsection      
7c77#a71 ! ,director may designate z an 
,,hht ,treatm5t ,c5t] ( ,excell5ce an   
academic heal? c5t] demon/rat+ ea* ( !  
foll[+3  7#a7 ,! academic heal? c5t]    
possesses 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 ,! academic heal? c5t]  
has suffici5t p]sonnel ) k ab\t ,,hht1  
or =mal collaboration ) "o or m p>tn]+  
organizations = p]sonnel or res\rces1 to
 be able to--  7,a7 respond 9 a         
coord9at$1 multidiscipl9>y way to pati5t
 inquiries2 &  7,b7 coord9ate           
evaluation1 treatm5t1 & education (     
pati5ts & _! families 9 a timely mann]4 
7#c7 ,! academic heal? c5t] has ! foll[+
 p]sonnel1 facilities1 & pati5t volume3 
7,a7 ,a m$ical director )--  7i7        
specializ$ k ( ! ma9 organ manife/ations

 ( ,,hht2 &  7ii7 ! ability to coord9ate
 ! multidiscipl9>y diagnosis & treatm5t 
( pati5ts ref]r$ to ! c5t]4  7,b7       
,adm9i/rative /aff )--  7i7 suffici5t k 
to respond to pati5t inquiries &        
coord9ate pati5t c>e 9 a timely fa%ion2 
&  7ii7 adequate f9ancial support to    
all[ ! /aff to commit at lea/ #be to #ej
 p]c5t ( _! "t on ! job to ,,hht4  7,c7 
,an otol>yngologi/ ) exp]i5ce & exp]tise
 9 ! treatm5t ( recurr5t epi/axis 9     
,,hht pati5ts4  7,d7 ,an int]v5tional   
radiologi/ ) exp]i5ce & exp]tise 9 !    
treatm5t ( pulmon>y art]iov5\s          
mal=mations 7,,avm74  7,e7 ,a g5etic    
c\nselor or g5etici/ ) ! exp]tise to    
provide ,,hht-specific g5etic c\nsel+ to
 pati5ts & families4  7,f7 ,on-site     
facilities to scre5 = all major organ   
manife/ations ( ,,hht4  7,g7 ,a pati5t  
volume ( at lea/ #be new ,,hht pati5ts  
p] ye>4  7,h7 ,e/abli%$ me*anisms to    
coord9ate surveillance & outrea* ) ,,hht
 pati5t advocacy organizations4  4  #f4 
,additional heal? & human s]vices       

activities ,) respect to h]$it>y        
hemorrhagic telangiectasia 7ref]r$ to 9 
?is section 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$ic>e  
program "u title ,,xviii ( ! ,social    
,security ,act =--  7,a7 prev5table co/s
 ( annual heal? c>e exp5ditures         
associat$ ) untreat$ ,,hht furni%$ to   
individuals ) ,,hht1 includ+ items1     
s]vices1 & treatm5ts2 &  7,b7           
socioeconomic co/s associat$ )          
prev5table m$ical ev5ts among           
individuals ) ,,hht :o are entitl$ to   
b5efits "u "p ,a ( title ,,xviii ( !    
,social ,security ,act or enroll$ "u "p 
,b ( su* title1 su* z disability        
exp5ditures2 &  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  #g4 ,au?orization (     
appropriations  7a7 ,9 g5]al ,to c>ry   
out section #dji,k ( ! ,public ,heal?   
,s]vice ,act z add$ by section #d ( ?is 
,act1 section #cag,u ( ! ,public ,heal? 
,s]vice ,act z add$ by section #e ( ?is 
,act1 & section #f ( ?is ,act1 !re is   
au?oriz$ to be appropriat$ #e1jjj1jjj = 
ea* ( fiscal ye>s #bjad ?r\gh #bjah4    
7b7 ,res\rce c5t] ,( ! am\nt au?oriz$ to
 be appropriat$ "u subsection 7a7 = ea* 
( fiscal ye>s #bjad ?r\gh #bjah1        
#a1jjj1jjj %all be = c>ry+ out section  
#cag,u7a77#d7 ( ! ,public ,heal? ,s]vice
 ,act1 z add$ by section #e ( ?is ,act4