,,iv  #aaf? ,,congress  #a/ ,session    
,h4 ,,res4 #afa  ,,9 ,,! ,,h\se ,,(     
,,repres5tatives  ,febru>y #bh1         
#bjai,mr4 ,c>son ( ,indiana submitt$ !  
foll[+ resolution2 :i* 0 ref]r$ to !    
,committee on ,en]gy & ,comm]ce         
,,resolution  ,express+ support = !     
designation ( ! la/ day ( ,febru>y ea*  
ye> z ,r>e ,disease ,day4  ,:]eas r>e   
diseases & disord]s are ^? :i* affect   
small pati5t populations1 typically     
populations small] ?an #bjj1jjj         
individuals 9 ! ,unit$ ,/ates2 ,:]eas m 
?an #g1jjj r>e diseases affect          
approximately #cj1jjj1jjj p 9 ! ,unit$  
,/ates & _! families2 ,:]eas *ildr5 )   
r>e diseases acc\nt = a significant     
proportion ( ! population affect$ by r>e
 diseases2 ,:]eas _m r>e diseases are   
s]i\s1 life-?reat5+1 & lack an effective
 treatm5t2 ,:]eas r>e diseases &        
conditions cross ! m$ical spectrum2     
,:]eas individuals ) r>e diseases       
exp]i5ce *all5ges t include difficulty 9
 obta9+ an accurate diagnosis1 limit$   

treatm5t options1 & difficulty f9d+     
physicians or treatm5t c5t]s ) exp]tise 
9 _! disease2 ,:]eas al?\gh ov] #gej    
drugs & biologics h be5 approv$ = !     
treatm5t ( r>e diseases by ! ,food &    
,drug ,adm9i/ration1 millions ( p 9 !   
,unit$ ,/ates h r>e diseases = :i* !re  
is no approv$ treatm5t2 ,:]eas lack (   
effective treatm5ts & difficulty 9      
obta9+ reimbursem5t = life-alt]+ & (t5  
life-sav+ treatm5ts rema9 significant   
*all5ges = individuals ) r>e diseases & 
_! families2 ,:]eas z a result ( !      
,orphan ,drug ,act1 !re h be5 important 
advances 9 rese>* ( & treatm5t = r>e    
diseases2 ,:]eas ! ,food & ,drug        
,adm9i/ration has tak5 great /rides 9   
ga!r+ pati5t p]spectives to in=m ! drug 
review process z "p ( its               
,pati5t-,focus$ ,drug ,developm5t       
program1 an initiative t 0 reaffirm$ "u 
! ,food & ,drug ,adm9i/ration           
,reau?orization ,act ( #bjag2 ,:]eas !  
#aae? ,congress pass$ a #aj-ye> ext5sion
 ( ! ,*ildr5's ,heal? ,insurance        

,program1 ensur+ cov]age = _m *ildr5 )  
r>e diseases2 ,:]eas bo? ! ,food & ,drug
 ,adm9i/ration & ! ,national ,in/itutes 
( ,heal? h e/abli%$ special (fices to   
support & facilitate r>e disease rese>* 
& treatm5ts2 ,:]eas ! ,national         
,organization = ,r>e ,disord]s1 a       
nonpr(it organization e/abli%$ 9 #aihc  
to provide s]vices to1 & advocate on    
behalf (1 pati5ts ) r>e diseases1 rema9s
 a critical public voice = p ) r>e      
diseases2 ,:]eas ! ,national            
,organization = ,r>e ,disord]s sponsors 
,r>e ,disease ,day 9 ! ,unit$ ,/ates &  
p>tn]s ) _m o!r major r>e disease       
organizations to increase public aw>5ess
 ( r>e diseases2 ,:]eas ,r>e ,disease   
,day is obs]v$ ea* ye> on ! la/ day (   
,febru>y2 ,:]eas ,r>e ,disease ,day 0   
obs]v$ 9 ! ,unit$ ,/ates = ! fir/ "t on 
,febru>y #bh1 #bjji1 & obs]v$ 9 m ?an   
#ij c\ntries 9 #bjah2 & ,:]eas ,r>e     
,disease ,day is expect$ to be obs]v$   
globally 9 ye>s to come1 provid+ hope & 
in=mation = r>e disease pati5ts ar\nd ! 

_w3 ,n[1 !re=e1 be x  ,t ! ,h\se (      
,repres5tatives-- 7#a7 supports !       
designation ( ,r>e ,disease ,day2  7#b7 
recognizes ! importance ( improv+       
aw>5ess & enc\rag+ accurate & e>ly      
diagnosis ( r>e diseases & disord]s2 &  
7#c7 supports a national & global       
commitm5t to improv+ access to1 &       
develop+ new treatm5ts1 diagno/ics1 &   
cures =1 r>e diseases & disord]s4