,,iii  #aafth ,,congress  #b;d ,session 
,s4 ,,res4 #ebi  ,,in ,,the ,,senate    
,,of ,,the ,,united ,,states  ,march #d1
 #bjbj,mr4 ,brown 7for himself1 ,mr4    
,barrasso1 ,mr4 ,markey1 ,ms4           
,klobuchar1 ,mr4 ,booker1 ,mr4          
,whitehouse1 ,mr4 ,blumenthal1 ,mr4     
,wicker1 and ,mr4 ,coons7 submitted the 
following resolution2 which was         
considered and agreed to  ,,resolution  
,designating ,february #bi1 #bjbj1 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     
typically affects fewer than #bjj1jjj   
individuals2 ,whereas1 as of the date of
 the adoption of this resolution1 more  
than #g1jjj rare diseases or disorders  
affect approximately #cj1jjj1jjj        
individuals in the ,united ,states and  
their families2 ,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-threatening and lack effective 
treatments2 ,whereas1 as a result of the
 enactment of the ,orphan ,drug ,act    
7,public ,law #ig-dad2 #if ,stat4       
#bjdi71 important advances have been    
made in the research and treatment of   
rare diseases and disorders2 ,whereas   
the ,food and ,drug ,administration has 
made 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 the ,food and
 ,drug ,administration has approved more
 than #hdj orphan indications for drugs 
and biological products for the         
treatment of rare diseases and          
disorders1 millions of individuals in   
the ,united ,states have a rare disease 

or disorder for which there is no       
approved treatment2 ,whereas limited    
treatment options and difficulty        
obtaining reimbursement for             
life-altering and lifesaving treatments 
can be challenging for individuals with 
rare diseases or disorders and their    
families2 ,whereas rare diseases and    
disorders include acrodermatitis        
enteropathica1 medulloblastoma1 ,hartnup
 disease1 mast cell activation syndrome1
 ,usher syndrome1 osteosarcoma1 ,kabuki 
syndrome1 ,fanconi anemia1              
,neurofibromatosis1 ,,ngly#a deficiency1
 ,chandler's syndrome1 tularemia1 and   
,joubert syndrome2 ,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 ,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    
diseases or disorders2 ,whereas the     
,food and ,drug ,administration and the 
,national ,institutes of ,health support
 research on the treatment of rare      
diseases and disorders2 ,whereas #bjbj  
marks the #cgth anniversary of the      
enactment of the ,orphan ,drug ,act     
7,public ,law #ig-dad2 #if ,stat4       
#bjdi72 ,whereas ,rare ,disease ,day is 
observed each year on the last day of   
,february2 ,whereas1 in #bjbj1 ,rare    
,disease ,day falls on the rarest of    
days1 ,february #bi2 ,whereas ,rare     
,disease ,day is a global event that was
 first observed in the ,united ,states  
on ,february #bh1 #bjji1 and was        
observed in more than #ajj countries in 
#bjai2 and ,whereas ,rare ,disease ,day 
is expected to be observed globally for 
years to come1 providing hope and       
information for rare disease and        
disorder patients around the world3     

,now1 therefore1 be it ,that the        
,senate-- 7#a7 designates ,february #bi1
 #bjbj1 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 efforts to develop effective
 treatments1 diagnostics1 and cures4