,,iii  #aae? ,,congress  #a/ ,session   
,s4 ,,res4 #gc  ,,9 ,,! ,,s5ate ,,( ,,! 
,,unit$ ,,/ates  ,febru>y #bh1 #bjag,mr4
 ,br[n 7= himself1 ,mr4 ,b>rasso1 ,mr4  
,:iteh\se1 ,ms4 ,w>r51 ,mr4 ,m>key1 ,mr4
 ,coons1 ,mr4 ,wick]1 ,mr4 ,van ,holl51 
,ms4 ,/ab5[1 ,mrs4 ,fe9/e91 ,ms4        
,klobu*>1 ,mr4 ,hat*1 & ,mr4 ,book]7    
submitt$ ! foll[+ resolution2 :i* 0     
consid]$ & agre$ to  ,,resolution       
,designat+ ,febru>y #bh1 #bjag1 z ,r>e  
,disease ,day4  ,:]eas a r>e disease or 
disord] is "o t affects a small numb] ( 
pati5ts &1 9 ! ,unit$ ,/ates1 typically 
few] ?an #bjj1jjj individuals annually  
are affect$ by a r>e disease or disord]2
 ,:]eas1 z ( ,febru>y #bjag1 ne>ly      
#g1jjj r>e diseases affect approximately
 #cj1jjj1jjj p 9 ! ,unit$ ,/ates & _!   
families2 ,:]eas *ildr5 ) r>e g5etic    
diseases acc\nt = approximately #a_/b ( 
! 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 

( ,f$]al laws l ! ,orphan ,drug ,act    
7,public ,law #ig-dad2 #if ,/at4 #bjdi71
 !re h be5 important advances made 9    
rese>* on1 & treatm5t =1 r>e diseases2  
,:]eas ! ,food & ,drug ,adm9i/ration has
 made great /rides 9 ga!r+ pati5t       
p]spectives to in=m ! drug review       
process z "p ( ! ,pati5t-,focus$ ,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 ne>ly #fjj drugs &
 biological products = ! treatm5t ( r>e 
diseases h be5 approv$ by ! ,food &     
,drug ,adm9i/ration1 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  
rema9 significant *all5ges = p ) r>e    
diseases & _! families2 ,:]eas r>e      
diseases & conditions include ,von      
,hippel-,l9dau syndrome1 fibr\s         

dysplasia1 sickle cell anemia1 sp9al    
muscul> atrophy1 ,du*5ne muscul>        
dy/rophy1 d]matomyositis1 cy/ic         
fibrosis1 ,fri$rei*'s ataxia1 _m        
*ildhood canc]s1 amyotrophic lat]al     
scl]osis1 epid]molysis bullosa1         
frontotemporal dem5tia1 & meta*romatic  
leukody/rophy2 ,:]eas p ) r>e diseases  
exp]i5ce *all5ges t include-- 7#a7      
difficulty 9 obta9+ accurate diagnoses2 
7#b7 limit$ 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+ ! #aad?        
,congress ) ! passage ( ! #ba/ ,c5tury  
,cures ,act 7,public ,law #aad-bee71    
:i*--  7#a7 /reaml9es ! review by !     
,commission] ( ,food & ,drugs (         
g5etically t>get$ !rapies2  7#b7        
inc5tivizes ! developm5t ( r>e p$iatric 
disease !rapies2  7#c7 /r5g!ns p$iatric 
m$ical rese>*2 &  7#d7 adds billions (  
doll>s ( fund+ = ! ,national ,in/itutes 
( ,heal?2  ,:]eas bo? ! ,food & ,drug   

,adm9i/ration & ! ,national ,in/itutes (
 ,heal? h e/abli%$ special (fices to    
advocate = r>e disease rese>* &         
treatm5ts2 ,:]eas ! ,national           
,organization = ,r>e ,disord]s 7ref]r$  
to 9 ?is preamble z ,,nord71 a nonpr(it 
organization e/abli%$ 9 #aihc to provide
 s]vices to1 & advocate on behalf (1    
pati5ts ) r>e diseases1 rema9s a        
critical public voice = p ) r>e         
diseases2 ,:]eas #bjag m>ks ! #cd?      
anniv]s>y ( ! enactm5t ( ! ,orphan ,drug
 ,act 7,public ,law #ig-dad2 #if ,/at4  
#bjdi7 & ! 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 ev5t1 fir/    
obs]v$ 9 ! ,unit$ ,/ates on ,febru>y    
#bh1 #bjji1 & 0 obs]v$ 9 m ?an #he      
c\ntries 9 #bjaf2 & ,:]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 #bjag1 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