,,iv  #aac? ,,congress  #a/ ,session    
,h4 ,,res4 #ia  ,,9 ,,! ,,h\se ,,(      
,,repres5tatives  ,febru>y #bh1 #bjac   
,mr4 ,c>son ( ,indiana 7= himself1 ,mr4 
,burgess1 ,mr4 ,c>twright1 ,mr4         
,cassidy1 ,mrs4 ,*ri/5s51 ,mr4 ,cony]s1 
,mr4 ,cr[ley1 ,mr4 ,holt1 ,mr4 ,lance1  
,ms4 ,lee ( ,cali=nia1 ,mr4 ,lev91 ,ms4 
,norton1 ,ms4 ,spei]1 & ,ms4 ,wass]man  
,s*ultz7 submitt$ ! foll[+ resolution2  
:i* 0 ref]r$ to ! ,committee on ,en]gy &
 ,comm]ce  ,,resolution  ,express+      
support = designation ( ,febru>y #bh1   
#bjac1 z ,r>e ,disease ,day4  ,:]eas r>e
 diseases & disord]s are ^? :i* affect  
small pati5t populations1 typically     
populations small] ?an #bjj1jjj p 9 !   
,unit$ ,/ates2 ,:]eas ne>ly #g1jjj r>e  
diseases affect #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 r>e diseases 

& conditions include epid]molysis       
bullosa1 prog]ia1 sickle cell anemia1   
,tay-,sa*s1 cy/ic fibrosis1 _m *ildhood 
canc]s1 & fibrodysplasia ossificans     
progressiva2 ,:]eas p ) r>e diseases    
exp]i5ce *all5ges t include difficulty 9
 obta9+ an accurate diagnosis1 limit$   
treatm5t options1 & difficulty f9d+     
physicians or treatm5t c5t]s ) exp]tise 
9 _! disease2 ,:]eas great /rides h be5 
made 9 rese>* & treatm5t = r>e diseases 
z a result ( ! ,orphan ,drug ,act2      
,:]eas #bjac m>ks ! #cj? anniv]s>y ( !  
,orphan ,drug ,act & !re=e a "t to      
reflect ^u its successes to date &      
*all5ges to be address$ 9 ! future2     
,:]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 to1 & advocate 
on behalf (1 pati5ts ) r>e diseases1 0 a
 prim>y =ce beh9d ! enactm5t ( ! ,orphan

 ,drug ,act & rema9s a critical public  
voice = p ) r>e diseases2 ,:]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 has 
become a global ev5t occurr+ annually on
 ! la/ day ( ,febru>y & obs]v$ 9 m ?an  
#fj c\ntries 9 #bjab2 ,:]eas ,r>e       
,disease ,day 0 obs]v$ 9 ! ,unit$ ,/ates
 = ! fir/ "t on ,febru>y #bh1 #bjji2    
,:]eas ,febru>y #bh1 #bjac1 w\ld be an  
appropriate date to designate z ,r>e    
,disease ,day2 & ,:]eas ,r>e ,disease   
,day is anticipat$ to be obs]v$ globally
 9 ye>s to come1 provid+ hope &         
in=mation = r>e disease pati5ts ar\nd ! 
_w3 ,n[1 !re=e1 be x  ,t ! ,h\se (      
,repres5tatives--  7#a7 supports !      
designation ( ,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 =1 r>e diseases & disord]s4