,,iv  #aae? ,,congress  #a/ ,session    
,h4 ,,res4 #aeg  ,,9 ,,! ,,h\se ,,(     
,,repres5tatives  ,febru>y #bh1         
#bjag,mr4 ,c>son ( ,indiana 7= himself1 
,mr4 ,mc,caul1 ,ms4 ,bordallo1 ,mr4     
,cr[ley1 ,mr4 ,deut*1 ,mr4 ,lance1 ,mr4 
,mac,arthur1 ,mr4 ,m>9o1 ,ms4 ,moore1   
,ms4 ,norton1 & ,mr4 ,pet]s7 submitt$ ! 
foll[+ resolution2 :i* 0 ref]r$ to !    
,committee on ,en]gy & ,comm]ce         
,,resolution  ,express+ support = !     
designation ( ! la/ day ( ,febru>y ea*  
ye>1 z ,r>e ,disease ,day4  ,:]eas r>e  
diseases & disord]s are ^? :i* affect   
small pati5t populations1 typically     
populations small] ?an #bjj1jjj         
individuals 9 ! ,unit$ ,/ates2 ,:]eas   
ne>ly #g1jjj r>e diseases affect ne>ly  
#cj1jjj1jjj p 9 ! ,unit$ ,/ates & _!    
families2 ,:]eas ov] half ( all r>e     
diseases affect *ildr52 ,:]eas _m r>e   
diseases are s]i\s1 life-?reat5+1 & lack
 an effective treatm5t2 ,:]eas r>e      
diseases & conditions cross ! m$ical    
spectrum & include a broad range (      

diseases su* z epid]molysis bullosa1    
prog]ia1 sickle cell anemia1 ,tay-,sa*s1
 ,leigh's disease1 ,,wagr syndrome1     
cy/ic fibrosis1 mo/ *ildhood canc]s1    
fibrodysplasia ossificans progressiva1  
,fri$rei*'s ataxia1 & tub]\s scl]osis2  
,:]eas p ) r>e diseases exp]i5ce        
*all5ges t include difficulty 9 obta9+  
an accurate diagnosis1 limit$ treatm5t  
options1 & difficulty f9d+ physicians or
 treatm5t c5t]s ) exp]tise 9 _! disease2
 ,:]eas m ?an #dej drugs & biologics h  
be5 approv$ = ! treatm5t ( r>e diseases 
accord+ to ! ,food & ,drug              
,adm9i/ration1 millions ( p 9 ! ,unit$  
,/ates h r>e diseases = :i* !re is no   
approv$ treatm5t2 ,:]eas *all5ges to    
reimbursem5t = life-alt]+ & (t5         
life-sav+ treatm5ts /ill exi/1 su* z 9  
reimbursem5t = m$ical foods t treat r>e 
metabolic disord]s2 ,:]eas great /rides 
h be5 made 9 rese>* & treatm5t = r>e    
diseases z a result ( ! ,orphan ,drug   
,act & am5dm5ts made by t ,act2 ,:]eas !
 ,food & ,drug ,adm9i/ration has tak5   

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 ,act2 ,:]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 is a global   
ev5t occurr+ annually on ! la/ day (    
,febru>y2 ,:]eas ,r>e ,disease ,day 0   
obs]v$ 9 ! ,unit$ ,/ates = ! fir/ "t on 
,febru>y #bh1 #bjji2 & ,:]eas ,r>e      

,disease ,day is anticipat$ to cont9ue  
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