,,iii  #aae? ,,congress  #b;d ,session  
,s4 ,,res4 #dbc  ,,9 ,,! ,,s5ate ,,( ,,!
 ,,unit$ ,,/ates  ,m>* #a1 #bjah,mr4    
,br[n 7= himself1 ,mr4 ,b>rasso1 ,mr4   
,m>key1 ,mr4 ,:iteh\se1 ,ms4 ,w>r51 ,ms4
 ,/ab5[1 ,mr4 ,wick]1 ,mr4 ,book]1 ,ms4 
,klobu*>1 & ,mr4 ,hat*7 submitt$ !      
foll[+ resolution2 :i* 0 consid]$ &     
agre$ to  ,,resolution  ,designat+      
,febru>y #bh1 #bjah1 z ,r>e ,disease    
,day4  ,:]eas a r>e disease or disord]  
is "o t affects a small numb] ( pati5ts1
 :i* 9 ! ,unit$ ,/ates is consid]$ to be
 a population ( less ?an #bjj1jjj       
individuals2 ,:]eas1 z ( ,febru>y #bjah1
 ne>ly #g1jjj r>e diseases affect       
approximately #cj1jjj1jjj p 9 ! ,unit$  
,/ates & _! families2 ,:]eas *ildr5 )   
r>e diseases acc\nt = ab\t half ( !     
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 important    

advances h be5 made 9 ! rese>* &        
treatm5t ( 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 orig9at$ "u !  
,food & ,drug ,adm9i/ration ,safety &   
,innovation ,act 7,public ,law #aab-add2
 #abf ,/at4 #iic72 ,:]eas1 al?\gh m ?an 
#fjj 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  
/ill rema9 significant *all5ges = p )   
r>e diseases & _! families2 ,:]eas r>e  
diseases & conditions include apla/ic   
anemia1 porphyria1 sp9a bifida1 /iff    
p]son syndrome1 ,gau*] disease1 diffuse 
pulmon>y lymphangiomatosis1             
adr5oleukody/rophy1 ,noonan syndrome1   

,rett syndrome1 ,moebius syndrome1      
,ca/leman ,disease1 epid]molytic        
i*?yosis1 & %ort b[el syndrome2 ,:]eas p
 ) r>e diseases exp]i5ce *all5ges t     
include-- 7#a7 difficulty 9 obta9+ an   
accurate diagnosis2  7#b7 limit$        
treatm5t options2 &  7#c7 difficulty    
f9d+ physicians or treatm5t c5t]s )     
exp]tise 9 r>e diseases2  ,:]eas ! r>e  
disease community ga9$ important new    
tools dur+ ! #aae? ,congress ) !        
enactm5t ( ! ,,fda ,reau?orization ,act 
( #bjag 7,public ,law #aae-eb2 #aca     
,/at4 #ajje71 :i*--  7#a7 advanc$ &     
facilitat$ ! developm5t & timely        
approval ( drugs & biologics = r>e      
diseases1 includ+ diseases affect+      
*ildr52  7#b7 reau?oriz$ us] fees to    
help deliv] safe & effective treatm5ts  
to individuals ) r>e diseases2  7#c7    
support$ ! utilization ( real-_w        
evid5ce2  7#d7 support$ pati5t-focus$   
drug developm5t2 &  7#e7 support$ !     
,national ,evaluation ,sy/em = ,heal?   
,te*nology2 ,:]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 z ,,nord 9 ?is preamble71 a nonpr(it 
organization e/abli%$ 9 #aihc to provide
 s]vices to & advocate on behalf (      
pati5ts ) r>e diseases1 rema9s a        
critical public voice = p ) r>e         
diseases2 ,:]eas #bjah m>ks ! #ce?      
anniv]s>y ( ! enactm5t ( ! ,orphan ,drug
 ,act & ! 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 0 fir/ 
obs]v$ 9 ! ,unit$ ,/ates on ,febru>y    
#bh1 #bjji1 & obs]v$ 9 m ?an #id        
c\ntries 9 #bjag2 & ,:]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 #bjah1 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 to
 & develop+ new treatm5ts1 diagno/ics1 &
 cures = r>e diseases & disord]s4