,,iii  #aaf? ,,congress  #a/ ,session   
,s4 ,,res4 #ij  ,,9 ,,! ,,s5ate ,,( ,,! 
,,unit$ ,,/ates  ,febru>y #bh1 #bjai,mr4
 ,br[n 7= himself1 ,mr4 ,b>rasso1 ,mr4  
,:iteh\se1 ,mr4 ,m>key1 ,mr4 ,blum5?al1 
,mr4 ,coons1 ,ms4 ,/ab5[1 ,mr4 ,book]1 &
 ,ms4 ,w>r57 submitt$ ! foll[+          
resolution2 :i* 0 consid]$ & agre$ to   
,,resolution  ,designat+ ,febru>y #bh1  
#bjai1 z ,r>e ,disease ,day4  ,:]eas a  
r>e disease or disord] is "o t affects a
 small numb] ( pati5ts1 :i*1 9 ! ,unit$ 
,/ates1 is consid]$ to be a population (
 few] ?an #bjj1jjj individuals2 ,:]eas1 
z ( ! date ( ! adoption ( ?is           
resolution1 m ?an #g1jjj r>e diseases   
affect z _m z #cj1jjj1jjj p 9 ! ,unit$  
,/ates & _! families2 ,:]eas *ildr5 )   
r>e diseases acc\nt = a significant     
portion ( ! population affect$ by r>e   
diseases 9 ! ,unit$ ,/ates2 ,:]eas _m   
r>e diseases are s]i\s & life-?reat5+ & 
lack effective treatm5ts2 ,:]eas1 z a   
result ( ! ,orphan ,drug ,act 7,public  
,law #ig-dad2 #if ,/at4 #bjdi71 !re h   

be5 important advances made 9 ! rese>*  
(1 & treatm5t =1 r>e diseases2 ,:]eas ! 
,food & ,drug ,adm9i/ration has made    
great /rides 9 ga!r+ pati5t p]spectives 
to in=m ! drug review process z "p ( !  
,pati5t-,focus$ ,drug ,developm5t       
program1 an initiative t 0 reaffirm$ "u 
! ,,fda ,reau?orization ,act ( #bjag    
7,public ,law #aae-eb2 #aca ,/at4       
#ajje72 ,:]eas1 al?\gh m ?an #gej orphan
 indications = drugs & biological       
products h be5 approv$ by ! ,food &     
,drug ,adm9i/ration = ! treatm5t ( r>e  
diseases1 millions ( p 9 ! ,unit$ ,/ates
 h a r>e disease = :i* !re is no approv$
 treatm5t2 ,:]eas lack ( access to      
effective treatm5ts & difficulty 9      
obta9+ reimbursem5t = life-alt]+1 & ev5 
life-sav+1 treatm5ts rema9 significant  
*all5ges = p ) r>e diseases & _!        
families2 ,:]eas r>e diseases &         
conditions include ,mc,ardle disease1   
,ehl]s-,danlos syndrome1 ac\/ic neuroma1
 ,paget disease1 ,l&au-,kleffn]         
syndrome1 necrotiz+ fasciitis1          

mucopolysac*>idosis type ,i1 ,rasmuss5  
encephalitis1 ,sanfilippo syndrome1     
,prad]-,willi syndrome1 ,wagn] syndrome1
 ,b>? syndrome1 & _m r>e canc]s2 ,:]eas 
p ) r>e diseases exp]i5ce *all5ges t    
include-- 7#a7 difficulty 9 obta9+      
accurate diagnoses2  7#b7 limit$        
treatm5t options2 &  7#c7 difficulty    
f9d+ physicians or treatm5t c5t]s )     
exp]tise 9 ! r>e disease affect+ !      
individual2  ,:]eas ! #aae? ,congress   
pass$ a #aj-ye> ext5sion ( ! ,*ildr5's  
,heal? ,insurance ,program "u title     
,,xxi ( ! ,social ,security ,act 7#db   
,u4,s4,c4 #acig;aa et seq471 ensur+     
heal? insurance 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]s 7ref]r$  
to 9 ?is preamble z ,,nord71 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 #bjai m>ks ! #cf?      
anniv]s>y ( ! enactm5t ( ! ,orphan ,drug
 ,act 7,public ,law #ig-dad2 #if ,/at4  
#bjdi7 & ! e/abli%m5t ( ,,nord2 ,:]eas  
,,nord 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 is a global ev5t t--  7#a7
 0 fir/ obs]v$ 9 ! ,unit$ ,/ates on     
,febru>y #bh1 #bjji2 &  7#b7 0 obs]v$ 9 
m ?an #ij c\ntries 9 #bjah2 & ,:]eas    
,r>e ,disease ,day is expect$ to be     
obs]v$ globally = ye>s to come1 provid+ 
hope & in=mation = r>e disease pati5ts  
ar\nd ! _w3 ,n[1 !re=e1 be x  ,t !      
,s5ate-- 7#a7 designates ,febru>y #bh1  
#bjai1 z ,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