,,iii  #aah? ,,congress  #a/ ,session   
,s4 ,,res4 #hd  ,,9 ,,! ,,s5ate ,,( ,,! 
,,unit$ ,,/ates  ,febru>y #bh1 #bjbc,mr4
 ,br[n 7= himself1 ,mr4 ,b>rasso1 ,mr4  
,blum5?al1 ,mr4 ,wick]1 ,mr4 ,:iteh\se1 
,ms4 ,klobu*>1 ,mr4 ,casey1 ,mr4 ,m>key1
 & ,mr4 ,book]7 submitt$ ! foll[+       
resolution2 :i* 0 consid]$ & agre$ to   
,,resolution  ,designat+ ,febru>y #bh1  
#bjbc1 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] affects few] ?an 
#bjj1jjj individuals2 ,:]eas1 z ( ! date
 ( ! adoption ( ?is resolution1 m ?an   
#be1jjj1jjj individuals 9 ! ,unit$      
,/ates are liv+ ) at lea/ #a ( ! m ?an  
#g1jjj kn[n r>e diseases or disord]s2   
,:]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+2 ,:]eas ?is ye> m>ks ! #dj?

 anniv]s>y ( ! enactm5t ( ! ,orphan     
,drug ,act 7,public ,law #ig-dad2 #if   
,/at4 #bjdi71 a l&m>k law enabl+        
trem5d\s advances 9 ! rese>* & treatm5t 
( r>e diseases & disord]s2 ,:]eas1 9    
#bjbb1 ! ,c5t] = ,drug ,evaluation &    
,rese>*1 9 ! ,food & ,drug ,adm9i/ration
 7ref]r$ to 9 ?is preamble z ,,fda71    
e/abli%$ ! ,accel]at+ ,r>e disease      
,cures program ) a vision ( spe$+ &     
increas+ ! developm5t ( effective & safe
 treatm5t options to address ! unmet    
ne$s ( pati5ts ) r>e diseases2 ,:]eas ! 
#aag? ,congress pass$ into law z "p ( ! 
,consolidat$ ,appropriations ,act1 #bjbc
 7,public ,law #aag-cbh2 #acf ,/at4     
#ddei71 provisions creat+ ! r>e disease 
endpo9t advancem5t pilot program 9 !    
,,fda to support ! developm5t ( novel   
efficacy endpo9ts to help facilitate !  
developm5t & timely approval ( r>e      
disease treatm5ts2 ,:]eas1 al?\gh !     
,,fda has approv$ m ?an #a1ajj drugs &  
biological products = an orphan         
indication = ! treatm5t ( a r>e disease 

or disord]1 approximately #ij p]c5t (   
r>e diseases d n h a treatm5t approv$ by
 ! ,,fda = _! condition2 ,:]eas limit$  
treatm5t options & f9anc+ 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 ,sanfilippo syndrome1        
microtia1 cy/9osis1 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$ !        
,m$icaid ,s]vices ,inve/m5t &           
,acc\ntability ,act ( #bjai 7,public    
,law #aaf-af2 #acc ,/at4 #heb71 :i*     
includ$ provisions = improv+ access to  
coord9at$1 pati5t-c5t]$ heal? c>e =     
*ildr5 ) complex & r>e m$ical conditions

 9 ,m$icaid1 & became effective ,octob] 
#a1 #bjbb2 ,:]eas ! ,,fda & ! ,national 
,in/itutes ( ,heal? support innovative  
rese>* on ! treatm5t ( r>e diseases &   
disord]s2 ,:]eas ,r>e ,disease ,day is  
obs]v$ 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 #bjbb2 & ,:]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
 #bjbc1 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