,,iv  #aag? ,,congress  #b;d ,session   
,h4 ,,res4 #ieb  ,,9 ,,! ,,h\se ,,(     
,,repres5tatives  ,febru>y #bh1         
#bjbb,mr4 ,c>son 7= himself1 ,mr4       
,hudson1 ,mrs4 ,beatty1 ,mr4            
,fitzpatrick1 ,mr4 ,swalwell1 ,ms4      
,matsui1 ,ms4 ,sewell1 ,mr4 ,payne1     
,miss ,gonzlez-,coln1 ,mr4 ,de,fazio1 & 
,mr4 ,rupp]sb]g]7 submitt$ ! foll[+     
resolution2 :i* 0 ref]r$ to ! ,committee
 on ,en]gy & ,comm]ce  ,,resolution     
,express+ support = ! designation (     
,febru>y #bh1 #bjbb1 z ,r>e ,disease    
,day4  ,:]eas a r>e disease or disord]  
is a disease or disord] t affects a     
small numb] ( pati5ts2 ,:]eas 9 ! ,unit$
 ,/ates1 a r>e disease or disord]       
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 7,,fda7 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 ,:]eas 
al?\gh ! ,food & ,drug ,adm9i/ration has
 approv$ m ?an #a1jjj orphan indications
 = drugs & biological products = !      
treatm5t ( r>e diseases & disord]s1 #ie 
p]c5t ( r>e diseases d n h 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          
amyotrophic lat]al scl]osis1 ?yroid eye 
disease1 myotonic dy/rophy1 t-cell      
prolymphocytic leukemia1 microtia1      
meatal atresia1 & conductive deafness2  
,:]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 #bjbb m>ks ! #ci? 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 #bjba2 & ,:]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 ! ,h\se (       
,repres5tatives-- 7#a7 expresses support
 = ! designation ( ,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