,,iii  #aaf? ,,congress  #b;d ,session  
,s4 ,,res4 #ebi  ,,9 ,,! ,,s5ate ,,( ,,!
 ,,unit$ ,,/ates  ,m>* #d1 #bjbj,mr4    
,br[n 7= himself1 ,mr4 ,b>rasso1 ,mr4   
,m>key1 ,ms4 ,klobu*>1 ,mr4 ,book]1 ,mr4
 ,:iteh\se1 ,mr4 ,blum5?al1 ,mr4 ,wick]1
 & ,mr4 ,coons7 submitt$ ! foll[+       
resolution2 :i* 0 consid]$ & agre$ to   
,,resolution  ,designat+ ,febru>y #bi1  
#bjbj1 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          
#cj1jjj1jjj individuals 9 ! ,unit$      
,/ates & _! families2 ,:]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   
#hdj orphan indications = drugs &       
biological products = ! treatm5t ( r>e  
diseases & disord]s1 millions (         
individuals 9 ! ,unit$ ,/ates h a r>e   
disease or disord] = :i* !re is no      
approv$ treatm5t2 ,:]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  

acrod]matitis ent]opa?ica1              
m$ullobla/oma1 ,h>tnup disease1 ma/ cell
 activation syndrome1 ,u%] syndrome1    
o/eos>coma1 ,kabuki syndrome1 ,fanconi  
anemia1 ,neur(ibromatosis1 ,,ngly#a     
defici5cy1 ,*&l]'s syndrome1 tul>emia1 &
 ,j\b]t syndrome2 ,:]eas individuals )  
r>e diseases or disord]s c exp]i5ce     
difficulty 9 obta9+ accurate diagnoses &
 f9d+ physicians or treatm5t c5t]s )    
exp]tise 9 _! r>e disease or disord]2   
,:]eas ! #aae? ,congress pass$ 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     
diseases or disord]s2 ,:]eas ! ,food &  
,drug ,adm9i/ration & ! ,national       
,in/itutes ( ,heal? support rese>* on ! 
treatm5t ( r>e diseases & disord]s2     
,:]eas #bjbj m>ks ! #cg? 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 ,:]eas1 9 #bjbj1  
,r>e ,disease ,day falls on ! r>e/ (    
days1 ,febru>y #bi2 ,:]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     
#bjai2 & ,:]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 #bi1 #bjbj1 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