,,iv  #aafth ,,congress  #ast ,session  
,h4 ,,res4 #afa  ,,in ,,the ,,house ,,of
 ,,representatives  ,february #bh1      
#bjai,mr4 ,carson of ,indiana submitted 
the following resolution2 which was     
referred to the ,committee on ,energy   
and ,commerce  ,,resolution  ,expressing
 support for the designation of the last
 day of ,february each year as ,rare    
,disease ,day4  ,whereas rare diseases  
and disorders are those which affect    
small patient populations1 typically    
populations smaller than #bjj1jjj       
individuals in the ,united ,states2     
,whereas more than #g1jjj rare diseases 
affect approximately #cj1jjj1jjj people 
in the ,united ,states and their        
families2 ,whereas children with rare   
diseases account for a significant      
proportion of the population affected by
 rare diseases2 ,whereas many rare      
diseases are serious1 life-threatening1 
and lack an effective treatment2        
,whereas rare diseases and conditions   
cross the medical spectrum2 ,whereas    

individuals with rare diseases          
experience challenges that include      
difficulty in obtaining an accurate     
diagnosis1 limited treatment options1   
and difficulty finding physicians or    
treatment centers with expertise in     
their disease2 ,whereas although over   
#gej drugs and biologics have been      
approved for the treatment of rare      
diseases by the ,food and ,drug         
,administration1 millions of people in  
the ,united ,states have rare diseases  
for which there is no approved          
treatment2 ,whereas lack of effective   
treatments and difficulty in obtaining  
reimbursement for life-altering and     
often life-saving treatments remain     
significant challenges for individuals  
with rare diseases and their families2  
,whereas as a result of the ,orphan     
,drug ,act1 there have been important   
advances in research of and treatment   
for rare diseases2 ,whereas the ,food   
and ,drug ,administration has taken     
great strides in gathering patient      

perspectives to inform the drug review  
process as part of its ,patient-,focused
 ,drug ,development program1 an         
initiative that was reaffirmed under the
 ,food and ,drug ,administration        
,reauthorization ,act of #bjag2 ,whereas
 the #aaeth ,congress passed a #aj-year 
extension of the ,children's ,health    
,insurance ,program1 ensuring 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 ,disorders1 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 the ,national ,organization for
 ,rare ,disorders 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 was        
observed in the ,united ,states for the 
first time on ,february #bh1 #bjji1 and 
observed in more than #ij countries in  
#bjah2 and ,whereas ,rare ,disease ,day 
is expected to be observed globally in  
years to come1 providing hope and       
information for rare disease patients   
around the world3 ,now1 therefore1 be it
  ,that the ,house of ,representatives--
 7#a7 supports the designation of ,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