,,iii  #aag? ,,congress  #a/ ,session   
,s4 ,,res4 #gd  ,,9 ,,! ,,s5ate ,,( ,,! 
,,unit$ ,,/ates  ,febru>y #bd1 #bjba,mr4
 ,br[n 7= himself1 ,mr4 ,b>rasso1 ,mr4  
,blum5?al1 ,mr4 ,scott ( ,s\? ,c>ol9a1  
,ms4 ,klobu*>1 ,mr4 ,wick]1 ,mr4 ,m>key1
 & ,mr4 ,book]7 submitt$ ! foll[+       
resolution2 :i* 0 consid]$ & agre$ to   
,,resolution  ,designat+ ,febru>y #bh1  
#bjba1 z ,r>e ,disease ,day4  ,:]eas a  
r>e disease or disord] is a disease or  
disord] t affects a small numb] (       
pati5ts2 ,:]eas1 9 ! ,unit$ ,/ates1 a   
r>e disease or disord] typically affects
 few] ?an #bjj1jjj individuals2 ,:]eas1 
z ( ! date ( ! adoption ( ?is           
resolution1 m ?an #g1jjj r>e diseases or
 disord]s affect approximately #a 9 #aj 
individuals 9 ! ,unit$ ,/ates2 ,:]eas   
*ildr5 ) r>e diseases or disord]s acc\nt
 = a significant portion ( ! population 
affect$ by r>e diseases or disord]s 9 ! 
,unit$ ,/ates2 ,:]eas _m r>e diseases & 
disord]s are s]i\s & life-?reat5+ & lack
 effective treatm5ts2 ,:]eas1 z a result

 ( ! enactm5t ( ! ,orphan ,drug ,act    
7,public ,law #ig-dad2 #if ,/at4 #bjdi71
 important advances h be5 made 9 !      
rese>* & treatm5t ( r>e diseases &      
disord]s2 ,:]eas ! ,food & ,drug        
,adm9i/ration has made /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 ! ,food & 
,drug ,adm9i/ration has approv$ m ?an   
#hhj orphan indications = drugs &       
biological products = ! treatm5t ( r>e  
diseases & disord]s1 #ij p]c5t (        
individuals 9 ! ,unit$ ,/ates ) a r>e   
disease or disord] are n receiv+ an     
,,fda-approv$ treatm5t = _! condition2  
,:]eas limit$ treatm5t options &        
difficulty obta9+ reimbursem5t =        
life-alt]+ & lifesav+ treatm5ts c be    
*all5g+ = individuals ) r>e diseases or 
disord]s & _! families2 ,:]eas r>e      
diseases & disord]s include sickle cell 

anemia1 sp9al muscul> atrophy1 common   
v>iable immune defici5cy1 m$ian arcuate 
ligam5t syndrome1 glycog5 /orage disease
 type ,v1 pulmon>y hyp]t5sion1          
hemophilia1 cy/ic fibrosis1 s>coidosis1 
amyotrophic lat]al scl]osis1 & autosomal
 recessive polycy/ic kidney disease2    
,:]eas individuals ) r>e diseases or    
disord]s c exp]i5ce difficulty 9 obta9+ 
accurate diagnoses & f9d+ physicians or 
treatm5t c5t]s ) exp]tise 9 _! r>e      
disease or disord]2 ,:]eas ! #aaf?      
,congress pass$ a #d-ye> ext5sion ( !   
,r>e ,p$iatric ,disease ,priority       
,review ,v\*] program "u section        
#ebi7;b7 ( ! ,f$]al ,food1 ,drug1 &     
,cosmetic ,act 7#ba ,u4,s4,c4           
#cfj;ff7b77 z "p ( ! ,consolidat$       
,appropriations ,act1 #bjba 7,public    
,law #aaf-bfj2 #acd ,/at4 #aahb71       
provid+ an inc5tive = ! developm5t (    
!rapies = *ildr5 ) r>e diseases2 ,:]eas 
! #aaf? ,congress pass$ ! ,advanc+ ,c>e 
= ,exceptional ,kids ,act 7,public ,law 
#aaf-af2 #acc ,/at4 #heb71 improv+      

access to coord9at$1 pati5t-c5t]$ heal? 
c>e = *ildr5 ) complex & r>e m$ical     
conditions 9 ,m$icaid2 ,:]eas ! ,food & 
,drug ,adm9i/ration & ! ,national       
,in/itutes ( ,heal? support rese>* on ! 
treatm5t ( r>e diseases & disord]s2     
,:]eas #bjba m>ks ! #ch? anniv]s>y ( !  
enactm5t ( ! ,orphan ,drug ,act 7,public
 ,law #ig-dad2 #if ,/at4 #bjdi72 ,:]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 & 0 obs]v$ 9 m ?an #ajj     
c\ntries 9 #bjbj2 & ,:]eas ,r>e ,disease
 ,day is expect$ to be obs]v$ globally =
 ye>s to come1 provid+ hope & in=mation 
= r>e disease & disord] pati5ts ar\nd ! 
_w3 ,n[1 !re=e1 be x ,t ! ,s5ate-- 7#a7 
designates ,febru>y #bh1 #bjba1 z ,r>e  
,disease ,day2 &  7#b7 recognizes !     
importance (1 ) respect to r>e diseases 
& disord]s-- 7,a7 improv+ aw>5ess2  7,b7
 enc\rag+ accurate & e>ly diagnosis2 &  
7,c7 support+ national & global ef=ts to

 develop effective treatm5ts1           
diagno/ics1 & cures4