,,iii  #aafth ,,congress  #ast ,session 
,s4 ,,res4 #ij  ,,in ,,the ,,senate ,,of
 ,,the ,,united ,,states  ,february #bh1
 #bjai,mr4 ,brown 7for himself1 ,mr4    
,barrasso1 ,mr4 ,whitehouse1 ,mr4       
,markey1 ,mr4 ,blumenthal1 ,mr4 ,coons1 
,ms4 ,stabenow1 ,mr4 ,booker1 and ,ms4  
,warren7 submitted the following        
resolution2 which was considered and    
agreed to  ,,resolution  ,designating   
,february #bh1 #bjai1 as ,rare ,disease 
,day4  ,whereas a rare disease or       
disorder is one that affects a small    
number of patients1 which1 in the       
,united ,states1 is considered to be a  
population of fewer than #bjj1jjj       
individuals2 ,whereas1 as of the date of
 the adoption of this resolution1 more  
than #g1jjj rare diseases affect as many
 as #cj1jjj1jjj people in the ,united   
,states and their families2 ,whereas    
children with rare diseases account for 
a significant portion of the population 
affected by rare diseases in the ,united
 ,states2 ,whereas many rare diseases   

are serious and life-threatening and    
lack effective treatments2 ,whereas1 as 
a result of the ,orphan ,drug ,act      
7,public ,law #ig-dad2 #if ,stat4       
#bjdi71 there have been important       
advances made in the research of1 and   
treatment for1 rare diseases2 ,whereas  
the ,food and ,drug ,administration has 
made great strides in gathering patient 
perspectives to inform the drug review  
process as part of the ,patient-,focused
 ,drug ,development program1 an         
initiative that was reaffirmed under the
 ,,fda ,reauthorization ,act of #bjag   
7,public ,law #aae-eb2 #aca ,stat4      
#ajje72 ,whereas1 although more than    
#gej orphan indications for drugs and   
biological products have been approved  
by the ,food and ,drug ,administration  
for the treatment of rare diseases1     
millions of people in the ,united       
,states have a rare disease for which   
there is no approved treatment2 ,whereas
 lack of access to effective treatments 
and difficulty in obtaining             

reimbursement for life-altering1 and    
even life-saving1 treatments remain     
significant challenges for people with  
rare diseases and their families2       
,whereas rare diseases and conditions   
include ,mc,ardle disease1              
,ehlers-,danlos syndrome1 acoustic      
neuroma1 ,paget disease1                
,landau-,kleffner syndrome1 necrotizing 
fasciitis1 mucopolysaccharidosis type   
,i1 ,rasmussen encephalitis1 ,sanfilippo
 syndrome1 ,prader-,willi syndrome1     
,wagner syndrome1 ,barth syndrome1 and  
many rare cancers2 ,whereas people with 
rare diseases experience challenges that
 include-- 7#a7 difficulty in obtaining 
accurate diagnoses2  7#b7 limited       
treatment options2 and  7#c7 difficulty 
finding physicians or treatment centers 
with expertise in the rare disease      
affecting the individual2  ,whereas the 
#aaeth ,congress passed a #aj-year      
extension of the ,children's ,health    
,insurance ,program under title ,,xxi of
 the ,social ,security ,act 7#db        

,u4,s4,c4 #acig;aa et seq471 ensuring   
health insurance coverage for many      
children with rare diseases2 ,whereas   
both the ,food and ,drug ,administration
 and the ,national ,institutes of       
,health have established special offices
 to support and facilitate rare disease 
research and treatments2 ,whereas the   
,national ,organization for ,rare       
,disorders 7referred to in this preamble
 as ,,nord71 a nonprofit organization   
established in #aihc to provide services
 to1 and advocate on behalf of1 patients
 with rare diseases1 remains a critical 
public voice for people with rare       
diseases2 ,whereas #bjai marks the #cfth
 anniversary of the enactment of the    
,orphan ,drug ,act 7,public ,law        
#ig-dad2 #if ,stat4 #bjdi7 and the      
establishment of ,,nord2 ,whereas ,,nord
 sponsors ,rare ,disease ,day in the    
,united ,states and partners with many  
other major rare disease organizations  
to increase public awareness of rare    
diseases2 ,whereas ,rare ,disease ,day  

is observed each year on the last day of
 ,february2 ,whereas ,rare ,disease ,day
 is a global event that--  7#a7 was     
first observed in the ,united ,states on
 ,february #bh1 #bjji2 and  7#b7 was    
observed in more than #ij countries in  
#bjah2 and ,whereas ,rare ,disease ,day 
is expected to be observed globally for 
years to come1 providing hope and       
information for rare disease patients   
around the world3 ,now1 therefore1 be it
  ,that the ,senate-- 7#a7 designates   
,february #bh1 #bjai1 as ,rare ,disease 
,day2  7#b7 recognizes the importance of
 improving awareness and encouraging    
accurate and early diagnosis of rare    
diseases and disorders2 and  7#c7       
supports a national and global          
commitment to improving access to1 and  
developing new treatments1 diagnostics1 
and cures for1 rare diseases and        
disorders4