,,iv  #aac? ,,congress  #b;d ,session   
,h4 ,,res4 #dic  ,,9 ,,! ,,h\se ,,(     
,,repres5tatives  ,febru>y #bg1 #bjad   
,mr4 ,c>son ( ,indiana 7= himself1 ,mr4 
,cr[ley1 ,mr4 ,lance1 ,mrs4 ,*ri/5s51   
,mr4 ,pascrell1 & ,mr4 ,mc,caul7        
submitt$ ! foll[+ resolution2 :i* 0     
ref]r$ to ! ,committee on ,en]gy &      
,comm]ce  ,,resolution  ,express+       
support = ! designation ( ,febru>y #bh1 
#bjad1 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 "o-?ird (
 treatm5ts approv$ by ! ,food & ,drug   
,adm9i/ration 9 #bjac 7 orphan products 
int5d$ to treat r>e diseases2 ,:]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
 cy/ic fibrosis1 mo/ *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 ! r>e disease community made    
great /rides 9 #bjac1 includ+ pass+ !   
,national ,p$iatric ,rese>* ,network    
,act :i* sets up a network h\s$ )9 !    
,,nih t facilitates great] collaboration
 among/ rese>* into p$iatric diseases2  
,:]eas *all5ges to reimbursem5t =       
life-alt]+ & (t5 life-sav+ treatm5ts    
/ill exi/1 su* z 9 reimbursem5t = m$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 #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 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