,,iv  #aacth ,,congress  #b;d ,session  
,h4 ,,res4 #dic  ,,in ,,the ,,house ,,of
 ,,representatives  ,february #bg1 #bjad
 ,mr4 ,carson of ,indiana 7for himself1 
,mr4 ,crowley1 ,mr4 ,lance1 ,mrs4       
,christensen1 ,mr4 ,pascrell1 and ,mr4  
,mc,caul7 submitted the following       
resolution2 which was referred to the   
,committee on ,energy and ,commerce     
,,resolution  ,expressing support for   
the designation of ,february #bh1 #bjad1
 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 nearly #g1jjj rare    
diseases affect nearly #cj1jjj1jjj      
people in the ,united ,states and their 
families2 ,whereas over half of all rare
 diseases affect children2 ,whereas many
 rare diseases are serious1             
life-threatening1 and lack an effective 
treatment2 ,whereas one-third of        
treatments approved by the ,food and    

,drug ,administration in #bjac were     
orphan products intended to treat rare  
diseases2 ,whereas rare diseases and    
conditions cross the medical spectrum   
and include a broad range of diseases   
such as epidermolysis bullosa1 progeria1
 sickle cell anemia1 ,tay-,sachs1 cystic
 fibrosis1 most 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 the rare disease
 community made great strides in #bjac1 
including passing the ,national         
,pediatric ,research ,network ,act which
 sets up a network housed within the    
,,nih that facilitates greater          
collaboration amongst research into     
pediatric diseases2 ,whereas challenges 
to reimbursement for life-altering and  
often life-saving treatments still      

exist1 such as in reimbursement for     
medical foods that treat rare metabolic 
disorders2 ,whereas great strides have  
been made in research and treatment for 
rare diseases as a result of the ,orphan
 ,drug ,act and amendments made by that 
,act2 ,whereas the ,food and ,drug      
,administration has taken great strides 
in involving the patient in the drug    
review process as part of its           
,patient-,focused ,drug ,development    
program1 an initiative that originated  
in the ,food and ,drug ,administration  
,safety and ,innovation ,act2 ,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 #bjac marked the
 #cjth anniversary of the ,orphan ,drug 
,act and the ,national ,organization for
 ,rare ,disorders2 ,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 is a global
 event occurring annually on the last   
day of ,february2 ,whereas ,rare        
,disease ,day was observed in the       
,united ,states for the first time on   
,february #bh1 #bjji2 and ,whereas ,rare
 ,disease ,day is anticipated to        
continue 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