,,iii  #aac? ,,congress  #b;d ,session  
,s4 ,,res4 #cfh  ,,9 ,,! ,,s5ate ,,( ,,!
 ,,unit$ ,,/ates  ,febru>y #bg1 #bjad   
,mr4 ,br[n 7= himself1 ,mr4 ,b>rasso1   
,mr4 ,wick]1 ,mr4 ,coons1 ,mr4 ,b5net1  
,mr4 ,:iteh\se1 ,mrs4 ,fe9/e91 ,mr4     
,pryor1 & ,ms4 ,w>r57 submitt$ ! foll[+ 
resolution2 :i* 0 consid]$ & agre$ to   
,,resolution  ,designat+ ,febru>y #bh1  
#bjad1 z ,r>e ,disease ,day4  ,:]eas a  
r>e disease or disord] is "o t affects a
 small numb] ( pati5ts - 9 ! ,unit$     
,/ates1 typically less ?an #bjj1jjj     
individuals annually2 ,:]eas z ( ! date 
( approval ( ?is resolution1 ne>ly      
#g1jjj r>e diseases affect approximately
 #cj1jjj1jjj p 9 ! ,unit$ ,/ates & _!   
families2 ,:]eas *ildr5 ) r>e g5etic    
diseases acc\nt = m ?an half ( !        
population affect$ by r>e diseases 9 !  
,unit$ ,/ates2 ,:]eas _m r>e diseases   
are s]i\s1 life-?reat5+1 & lack an      
effective treatm5t2 ,:]eas great /rides 
h be5 made 9 rese>* & treatm5t = r>e    
diseases z a result ( ! ,orphan ,drug   

,act 7,public ,law #ig-dad72 ,:]eas !   
,food & ,drug ,adm9i/ration has made    
great /rides 9 involv+ ! pati5t 9 ! drug
 review process z "p ( its              
,pati5t-,focus$ ,drug ,developm5t       
program1 an initiative t orig9at$ 9 !   
,food & ,drug ,adm9i/ration ,safety &   
,innovation ,act 7,public ,law          
#aab-add72 ,:]eas a ?ird ( all treatm5ts
 approv$ by ! ,food & ,drug             
,adm9i/ration 9 #bjac 7 orphan products 
int5d$ to treat r>e diseases2 ,:]eas    
lack ( access to effective treatm5ts &  
difficulty 9 obta9+ reimbursem5t =      
life-alt]+1 & ev5 life-sav+1 treatm5ts  
/ill exi/ & rema9 significant *all5ges =
 ! r>e disease community & _! families2 
,:]eas r>e diseases & conditions include
 epid]molysis bullosa1 prog]ia1 sickle  
cell anemia1 sp9al muscul> atrophy      
7,,sma71 ,du*5ne muscul> dy/rophy       
7,,dmd71 ,tay-,sa*s1 cy/ic fibrosis1    
pulmon>y fibrosis1 _m *ildhood canc]s1 &
 fibrodysplasia ossificans progressiva2 
,:]eas p ) r>e diseases exp]i5ce        

*all5ges t include difficulty 9 obta9+  
accurate diagnoses1 limit$ treatm5t     
options1 & difficulty f9d+ physicians or
 treatm5t c5t]s ) exp]tise 9 _!         
diseases2 ,:]eas ! r>e disease community
 made great /rides 9 #bjac1 includ+ !   
passage ( ! ,national ,p$iatric ,rese>* 
,network ,act 7,public ,law #aac-ee71   
:i* calls special att5tion to r>e       
diseases & directs ! ,national          
,in/itutes ( ,heal? to facilitate great]
 collaboration among rese>*]s2 ,:]eas   
bo? ! ,food & ,drug ,adm9i/ration & !   
,national ,in/itutes ( ,heal? h e/abli%$
 special (fices to advocate = r>e       
disease rese>* & treatm5ts2 ,:]eas !    
,national ,organization = ,r>e          
,disord]s1 an organization e/abli%$ 9   
#aihc to provide s]vices to & advocate  
on behalf ( pati5ts ) r>e diseases1     
rema9s a critical public voice = p ) r>e
 diseases2 ,:]eas #bjac m>k$ ! #cj?     
anniv]s>y ( ! ,orphan ,drug ,act & !    
,national ,organization = ,r>e          
,disord]s2 ,:]eas ! ,national           

,organization = ,r>e ,disord]s sponsors 
,r>e ,disease ,day 9 ! ,unit$ ,/ates 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 & obs]v$ 9 #fj c\ntries 9   
#bjac2 & ,:]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 #bjad1 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 to1 &
 develop+ new treatm5ts1 diagno/ics1 &  
cures = r>e diseases & disord]s4