,i  #aac? ,,congress  #a/ ,session  ,h4 
,r4 #beba  ,,9 ,,! ,,h\se ,,(           
,,repres5tatives  ,june #bf1 #bjac ,mr4 
,b5 ,ray ,lujn ( ,new ,mexico 7=        
himself1 ,ms4 ,mi*elle ,lujan ,gri%am ( 
,new ,mexico1 & ,mr4 ,pe>ce7 introduc$ !
 foll[+ bill2 :i* 0 ref]r$ to !         
,committee on ,en]gy & ,comm]ce  ,a     
,,bill  ,to am5d ! ,public ,heal?       
,s]vice ,act to exp& & int5sify programs
 ( ! ,national ,in/itutes ( ,heal? & !  
,c5t]s = ,disease ,control & ,prev5tion 
) respect to translational rese>* &     
relat$ activities conc]n+ cav]n\s       
angioma1 & = o!r purposes4  #a4 ,%ort   
title ,?is ,act may be cit$ z ! ,cav]n\s
 ,angioma ,rese>* ,res\rce ,act ( #bjac4
  #b4 ,f9d+s ,congress makes ! foll[+   
f9d+s3  7#a7 ,cav]n\s angioma1 also t]m$
 c]ebral cav]n\s mal=mations or ,,ccm1  
affects an e/imat$ #a1ejj1jjj p 9 !     
,unit$ ,/ates4  7#b7 ,cav]n\s angioma is
 a deva/at+ blood vessel disease t is   
*>act]iz$ by ! pres5ce ( vascul> lesions
 t develop & gr[ )9 ! bra9 & sp9al cord4

  7#c7 ,detection ( cav]n\s angioma     
lesions is a*iev$ ?r\gh co/ly &         
specializ$ m$ical imag+ te*niques4 ,^!  
te*niques are (t5 n readily available   
:]e pati5ts live1 & require s$ation =   
*ildr5 & disabl$ adults4  7#d7 ,cav]n\s 
angioma is a common type ( vascul>      
anomaly1 b individuals may n be aw>e t  
!y h ! disease until ! onset ( s]i\s    
cl9ical symptoms4 ,9 ! g5etic =ms1 !y   
may n be aw>e t x may be pass$ on to _! 
*ildr54  7#e7 ,individuals diagnos$ )   
cav]n\s angioma may exp]i5ce            
neurological deficits1 seizure1 /roke1  
or sudd5 dea?4  7#f7 ,due to limit$     
rese>* ) respect to cav]n\s angioma1 !re
 is no treatm5t regim5 = ! disease o!r  
?an bra9 & sp9al surg]y4  7#g7 ,"s      
individuals ) cav]n\s angioma are n     
c&idates = bra9 surg]y4 ,no alt]native  
treatm5t option is available = su*      
individuals4  7#h7 ,!re is a %ortage (  
physicians :o are famili> ) cav]n\s     
angioma & affect$ individuals may f9d x 
difficult to receive timely diagnosis & 

appropriate c>e4  7#i7 ,due to ! pres5ce
 ( a specific disease-caus+ mutation1   
t]m$ ! common ,hispanic mutation t has  
pass$ ?r\gh z _m z #ag g5]ations (      
,am]icans desc5d$ f ! orig9al ,spani%   
settl]s ( ! ,s\?we/ 9 ! #aeijs1 ,new    
,mexico has ! highe/ population d5sity (
 cav]n\s angioma 9 ! _w4 ,cav]n\s       
angioma affects ?\s&s ( individuals 9   
,new ,mexico & ) ance/ry 9 ,new ,mexico4
  7#aj7 ,o!r ,/ates ) high rates (      
cav]n\s angioma due to ! common         
,hispanic ,mutation include ,texas1     
,arizona1 & ,colorado4  7#aa7 ,to       
address ! public heal? ?reat pos$ by    
cav]n\s angioma 9 ,new ,mexico & ?r\gh\t
 ! ,unit$ ,/ates1 !re is a ne$ to       
id5tify in/itutions capable ( runn+     
cl9ical trial = ?is debilitat+ bra9     
disord]4  #c4 ,cav]n\s angioma rese>*   
activities ,"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 ,cav]n\s   
angioma rese>* activities  7a7          

,expansion1 ,int5sification1 &          
,coord9ation ( ,activities ,! ,director 
( ,,nih1 act+ ?r\gh ! director ( !      
,national ,in/itute ( ,neurological     
,disord]s & ,/roke1 %all exp& & int5sify
 programs ( ! ,national ,in/itutes (    
,heal? or may aw>d grants & coop]ative  
agreem5ts to public or nonpr(it private 
entities 7includ+ ,/ate heal? dep>tm5ts1
 political subdivisions ( ,/ates1       
univ]sities1 & o!r educational entities7
 = rese>* & relat$ activities conc]n+   
cav]n\s angioma4  7b7 ,activities ,9    
exp&+ & int5sify+ programs "u subsection
 7a71 ! ,director ( ,,nih may c>ry out !
 foll[+3  7#a7 ,basic1 translational1 & 
cl9ical rese>* ,conduct or f9ancially   
support basic1 cl9ical1 & translational 
rese>* on cav]n\s angioma1 includ+      
rese>* on ! foll[+3  7,a7 ,proteomic1   
ph>macological1 & cell biological       
analysis ( ! c]ebral cav]n\s mal=mations
 7ref]r$ to 9 ?is section z ! ,,ccm7    
molecules4  7,b7 ,cont9u$ developm5t &  
expansion ( novel animal models =       

cav]n\s angioma precl9ical rese>*4  7,c7
 ,e>ly detection1 diagnosis1 & treatm5t 
( cav]n\s angioma4  7,d7 ,biological    
me*anisms = lesion g5esis1 developm5t1 &
 maturation4  7,e7 ,biological me*anisms
 = lesion ble$+ & symptomology4  7,f7   
,novel biom$ical & ph>macological       
int]v5tions design$ to prohibit new     
lesion developm5t1 lesion gr[?1 & lesion
 ble$+4  7,g7 ,contributions ( g5etic   
v>iation to cl9ical pres5tation z t>gets
 = !rapy4  7,h7 ,id5tification &        
developm5t ( biom>k]s to measure        
ph5otypic v>iation4  7,i7 ,rese>* relat$
 to improv+ ! quality ( life =          
individuals ) cav]n\s angioma & _!      
families4  7,j7 ,cl9ical tra9+ programs 
aim$ at increas+ ! numb] ( sci5ti/s &   
cl9icians :o are tra9$ to treat pati5ts 
& c>ry out ^! rese>* directions4  7#b7  
,facilitation ( rese>* res\rces2 cl9ical
 trial prep>$ness  7,a7 ,coord9ation    
,id5tify & support ! developm5t ( a     
cl9ical & rese>* coord9at+ c5t] ) !     
pot5tial ( coord9at+ a multi-site       

cl9ical drug trial = cav]n\s angioma4   
,su* coord9at+ c5t] %all provide a model
 = additional trial sites1 facilitate   
m$ical rese>* to develop a cure =       
cav]n\s angioma1 & enhance ! m$ical c>e 
( individuals ) cav]n\s angioma         
nationwide4 ,su* coord9at+ c5t] %all--  
7i7 h an in/itutional infra/ructure t is
 capable ( ho/+ a cl9ical trial site &  
facilitat+ translational projects &     
collaborations = cl9ical trials2  7ii7 h
 ! capacity to ma9ta9 programs d$icat$  
to pati5t education1 pati5t outrea*1 &  
aw>5ess1 includ+--  7,i7 laun*+ a       
national multim$ia public aw>5ess       
campaign2  7,,ii7 creat+ & di/ribut+    
pati5t education mat]ials = di/ribution 
by national physician & surgeon (fices2 
7,,iii7 e/abli%+ an education program = 
elem5t>y & second>y s*ool nurses to     
facilitate e>ly detection & diagnosis ( 
cav]n\s angioma 9 areas ( high cav]n\s  
angioma population d5sity2  7,,iv7      
coord9at+ regul> pati5t & family-ori5t$ 
educational conf]5ces2 &  7,v7 develop+ 

nationally relevant electronic heal?    
tea*+ & communication tools & a network 
( pr(essional capacity & pati5t & family
 support2  7iii7 h ! capacity to e/abli%
 & ma9ta9 communication ) o!r major     
cav]n\s angioma rese>* & c>e in/itutions
 int]nationally = in=mation %>+ &       
coord9ation ( rese>* activities2  7iv7 h
 demon/rat$ cl9ical exp]tise 9 cav]n\s  
angioma managem5t2  7v7 h a suffici5t   
numb] ( eligible pati5ts = p>ticipation 
) p>ticul> focus on unique              
subpopulations includ+ ,common ,hispanic
 ,mutation & ,,ccm#c g5e mutation       
c>ri]s2 &  7vi7 h a teleheal?           
infra/ructure to support & to provide   
cl9ical consultation = remote & und]s]v$
 communities4  7,b7 ,p>ticipation       
,id5tify & support ! developm5t (       
cl9ical & rese>* p>ticipation c5t]s ) ! 
pot5tial to p>ticipate 9 a multi-site   
cl9ical drug trial = cav]n\s angioma4   
,su* p>ticipation c5t]s may facilitate  
m$ical rese>* to develop a cure =       
cav]n\s angioma & enhance ! m$ical c>e (

 individuals ) cav]n\s angioma 9        
p>tn]%ip ) ! coord9at+ c5t] "u          
subp>agraph 7,a7 & o!r national &       
int]national c5t]s4 ,su* p>ticipation   
c5t]s %all--  7i7 h an in/itutional     
infra/ructure capable ( ho/+ a cl9ical  
trial site & facilitat+ translational   
projects & collaborations = cl9ical     
trials2  7ii7 h ! capacity to ma9ta9    
communication ) o!r major cav]n\s       
angioma rese>* & c>e in/itutions        
int]nationally = in=mation %>+ &        
coord9ation ( rese>* activities2  7iii7 
h demon/rat$ cl9ical exp]tise 9 cav]n\s 
angioma managem5t2 &  7iv7 h a suffici5t
 numb]s ( eligible pati5ts =            
p>ticipation ) p>ticul> focus on unique 
subpopulations includ+ ,common ,hispanic
 ,mutation & ,,ccm#c g5e mutation c>ri]s
 z ^! unique populations may provide    
insight to o!r g5etic & non-g5etic =ms (
 ! illness4  7c7 ,tra9+ program =       
cl9icians & sci5ti/s  7#a7 ,9 g5]al     
,eligible coord9at+ & p>ticipation c5t]s
 "u ?is section %all e/abli% or exp&    

tra9+ programs = m$ical & alli$ heal?   
cl9icians & sci5ti/s 9 cl9ical practice 
& rese>* relevant to cav]n\s angioma4   
7#b7 ,rese>* res\rces ,9 c>ry+ out ?is  
subsection1 ! ,director ( ,,nih may--   
7,a7 use in=mation collect$ by !        
,national ,in/itutes ( ,heal? pursuant  
to o!r provisions ( law or prior to !   
date ( ! enactm5t ( ?is section2  7,b7  
take into consid]ation ! availability ( 
o!r rese>* res\rces2  7,c7 enc\rage !   
use ( rese>* res\rces = rese>* on1 &    
developm5t (1 !rapies & treatm5ts =     
individuals ) cav]n\s angioma2 &  7,d7  
enc\rage ! inclusion ( individuals )    
cav]n\s angioma 9 cl9ical trials        
conduct$ or support$ by ! ,national     
,in/itutes ( ,heal?4  7#c7 ,cav]n\s     
angioma consortium ,! ,director ( ,,nih 
may provide = ! p>ticipation ( ag5cies (
 ! ,national ,in/itutes ( ,heal? 9 a    
consortium to facilitate ! ex*ange (    
in=mation & to make ! rese>* ef=t on    
cav]n\s angioma m effici5t & effective  
by ensur+ consi/5t communication1       

m9imiz+ duplication ( ef=t1 & integrat+ 
! v>i$ p]spectives ( p>tn] ag5cies1     
organizations1 & individuals4 ,su*      
consortium %all include at lea/ "o      
national cav]n\s angioma pati5t advocacy
 organization & may be ! same consortium
 receiv+ a grant or contract "u         
subsection 7b77#b77;,a74  4  #d4 ,c5t]s 
= ,disease ,control & ,prev5tion cav]n\s
 angioma surveillance & rese>* programs 
,"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 ,cav]n\s      
angioma surveillance & rese>* programs  
7a7 ,9 g5]al ,! ,secret>y1 act+ ?r\gh ! 
,director ( ! ,c5t]s = ,disease ,control
 & ,prev5tion1 may aw>d grants &        
coop]ative agreem5ts to public or       
nonpr(it private entities 7includ+ ,/ate
 heal? dep>tm5ts1 political subdivisions
 ( ,/ates1 univ]sities1 & o!r           
educational entities7 = ! collection1   
analysis1 & report+ ( data on cav]n\s   
angioma4 ,9 mak+ su* aw>ds1 ! ,secret>y 

may provide direct te*nical assi/ance1  
includ+ p]sonnel support1 9 lieu ( ca%4 
7b7 ,national ,cav]n\s ,angioma         
,epidemiology ,program  7#a7 ,grants ,! 
,secret>y1 act+ ?r\gh ! ,director ( !   
,c5t]s = ,disease ,control & ,prev5tion1
 may aw>d grants to public or nonpr(it  
private entities 7includ+ ,/ate heal?   
dep>tm5ts1 political subdivisions (     
,/ates1 univ]sities1 & o!r educational  
entities7 = ! purpose ( c>ry+ out       
epidemiological activities reg>d+       
cav]n\s angioma1 includ+ collect+ &     
analyz+ in=mation on ! numb]1 incid5ce1 
correlates1 & symptoms ( cases & !      
cl9ical utility 7includ+ co/s & b5efits7
 ( specific practice patt]ns4 ,9 mak+   
su* aw>ds1 ! ,secret>y may provide      
direct te*nical assi/ance1 includ+      
p]sonnel support1 9 lieu ( ca%4  7#b7   
,national surveillance program ,9 c>ry+ 
out subsection 7a71 ! ,secret>y %all--  
7,a7 provide = a national surveillance  
program2 &  7,b7 :]e possible1 ensure t 
! surveillance program is coord9at$ ) ! 

data & sample collection activities ( ! 
,national ,in/itutes ( ,heal? "u section
 #dji,k4  4  #e4 ,food & ,drug          
,adm9i/ration cav]n\s angioma cl9ical   
trial prep>$ness & support program  7a7 
,inve/igational new drug application ,! 
,commission] ( ,food & ,drugs %all "w ) 
cl9ical c5t]s1 inve/igators1 & advocates
 to support appropriate inve/igational  
new drug application "u section #eje7;i7
 ( ! ,f$]al ,food1 ,drug1 & ,cosmetic   
,act 9 an ef=t to ha/5 ! pace ( cl9ical 
trials = cav]n\s angioma4  7b7 ,orphan  
product developm5t ,:]e applicable 9 r>e
 subpopulations ( cav]n\s angioma       
requir+ unique ph>macological           
int]v5tion1 includ+ ^? ) ! ,common      
,hispanic ,mutation or ,,ccm#c g5e      
mutations1 ! ,commission] ( ,food &     
,drugs %all support appropriate reque/s 
= designations ( drugs z orphan drugs "u
 section #ebf ( ! ,f$]al ,food1 ,drug1 &
 ,cosmetic ,act4  #f4 ,report to        
congress ,n lat] ?an ,janu>y #a1 #bjae1 
& ea* ,janu>y #a !reaft]1 ! ,secret>y ( 

,heal? & ,human ,s]vices %all prep>e &  
submit to ! appropriate committees ( !  
,congress a report conc]n+ !            
implem5tation ( ?is ,act & ! am5dm5ts   
made by ?is ,act4