,,iii  #aaith ,,congress  #b;d ,session 
,s4 ,,res4 #fbj  ,,in ,,the ,,senate    
,,of ,,the ,,united ,,states  ,february 
#bf1 #bjbf,mr4 ,barrasso 7for himself   
and ,mr4 ,blumenthal7 submitted the     
following resolution2 which was         
considered and agreed to  ,,resolution  
,designating ,february #bh1 #bjbf1 as   
,rare ,disease ,day4  ,whereas a rare   
disease or disorder is a disease or     
disorder that affects a small number of 
patients2 ,whereas1 in the ,united      
,states1 a rare disease or disorder is  
defined as affecting fewer than #bjj1jjj
 individuals2 ,whereas1 as of the date  
of adoption of this resolution1 more    
than #cj1jjj1jjj individuals in the     
,united ,states are living with at least
 #a of the more than #aj1jjj known rare 
diseases or disorders2 ,whereas children
 with rare diseases or disorders account
 for a significant portion of the       
population affected by rare diseases or 
disorders in the ,united ,states2       
,whereas many rare diseases and         

disorders are serious and               
life-threatening2 ,whereas financing    
life-altering and lifesaving treatments 
can be challenging for individuals with 
a rare disease or disorder and their    
families2 ,whereas individuals with rare
 diseases or disorders can experience   
difficulty in obtaining accurate        
diagnoses and finding physicians or     
treatment centers with expertise in     
their rare disease or disorder2         
,whereas1 although there have been great
 advancements in finding treatments for 
rare diseases1 approximately #ie percent
 of rare diseases still do not have a   
treatment approved by the ,,fda2        
,whereas #bjbf marks the #dcrd          
anniversary of the enactment of the     
,orphan ,drug ,act 7,public ,law        
#ig-dad2 #if ,stat4 #bjdi71 a landmark  
law enabling tremendous advances in the 
research and treatment of rare diseases 
and disorders2 ,whereas the ,national   
,institutes of ,health support          
innovative research on the treatment of 

rare diseases and disorders2 ,whereas   
programs such as the ,accelerating ,rare
 disease ,cures ,program of the ,food   
and ,drug ,administration 7referred to  
in this preamble as the ,,fda7 aim to   
drive scientific and regulatory         
innovation and engagement to accelerate 
the availability of treatments for      
patients with rare diseases2 ,whereas   
#bc of the #df novel drugs approved by  
the ,center for ,drug ,evaluation and   
,research of the ,,fda in #bjbe-- 7#a7  
were approved to prevent1 diagnose1 or  
treat a rare disease or condition2 and  
7#b7 received an orphan-drug            
designation2 ,whereas ,rare ,disease    
,day is observed each year on the last  
day of ,february2 and ,whereas ,rare    
,disease ,day is a global event that was
 first observed in the ,united ,states  
on ,february #bh1 #bjji3 ,now1          
therefore1 be it ,that the ,senate--    
7#a7 designates ,february #bh1 #bjbf1 as
 ,rare ,disease ,day2 and  7#b7         
recognizes the importance of1 with      

respect to rare diseases and disorders--
 7,a7 improving awareness2  7,b7        
encouraging accurate and early          
diagnosis2 and  7,c7 supporting national
 and global research efforts to develop 
effective treatments1 diagnostics1 and  
cures4