,,iv  #aacth ,,congress  #ast ,session  
,h4 ,,res4 #ia  ,,in ,,the ,,house ,,of 
,,representatives  ,february #bh1 #bjac 
,mr4 ,carson of ,indiana 7for himself1  
,mr4 ,burgess1 ,mr4 ,cartwright1 ,mr4   
,cassidy1 ,mrs4 ,christensen1 ,mr4      
,conyers1 ,mr4 ,crowley1 ,mr4 ,holt1    
,mr4 ,lance1 ,ms4 ,lee of ,california1  
,mr4 ,levin1 ,ms4 ,norton1 ,ms4 ,speier1
 and ,ms4 ,wasserman ,schultz7 submitted
 the following resolution2 which was    
referred to the ,committee on ,energy   
and ,commerce  ,,resolution  ,expressing
 support for designation of ,february   
#bh1 #bjac1 as ,rare ,disease ,day4     
,whereas rare diseases and disorders are
 those which affect small patient       
populations1 typically populations      
smaller than #bjj1jjj people in the     
,united ,states2 ,whereas nearly #g1jjj 
rare diseases affect #cj1jjj1jjj people 
in the ,united ,states and their        
families2 ,whereas children with rare   
genetic diseases account for more than  
half of the population affected by rare 

diseases in the ,united ,states2        
,whereas many rare diseases are serious1
 life-threatening1 and lack an effective
 treatment2 ,whereas rare diseases and  
conditions include epidermolysis        
bullosa1 progeria1 sickle cell anemia1  
,tay-,sachs1 cystic fibrosis1 many      
childhood cancers1 and fibrodysplasia   
ossificans progressiva2 ,whereas people 
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    
great strides have been made in research
 and treatment for rare diseases as a   
result of the ,orphan ,drug ,act2       
,whereas #bjac marks the #cjth          
anniversary of the ,orphan ,drug ,act   
and therefore a time to reflect upon its
 successes to date and challenges to be 
addressed in the future2 ,whereas both  
the ,food and ,drug ,administration and 
the ,national ,institutes of ,health    

have established special offices to     
advocate for rare disease research and  
treatments2 ,whereas the ,national      
,organization for ,rare ,disorders1 an  
organization established in #aihc to    
provide services to1 and advocate on    
behalf of1 patients with rare diseases1 
was a primary force behind the enactment
 of the ,orphan ,drug ,act and 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 to increase public      
awareness of rare diseases2 ,whereas    
,rare ,disease ,day has become a global 
event occurring annually on the last day
 of ,february and observed in more than 
#fj countries in #bjab2 ,whereas ,rare  
,disease ,day was observed in the       
,united ,states for the first time on   
,february #bh1 #bjji2 ,whereas ,february
 #bh1 #bjac1 would be an appropriate    
date to designate as ,rare ,disease     
,day2 and ,whereas ,rare ,disease ,day  

is anticipated 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