,,iii  #aacth ,,congress  #ast ,session 
,s4 ,,res4 #eg  ,,in ,,the ,,senate ,,of
 ,,the ,,united ,,states  ,february #bf1
 #bjac ,mr4 ,brown 7for himself1 ,mr4   
,barrasso1 ,mr4 ,whitehouse1 ,mr4       
,pryor1 and ,mrs4 ,hagan7 submitted the 
following resolution2 which was         
considered and agreed to  ,,resolution  
,designating ,february #bh1 #bjac1 as   
,rare ,disease ,day4  ,whereas rare     
diseases and disorders are those that   
affect a small number of patients1      
typically less than #bjj1jjj people in  
the ,united ,states2 ,whereas1 as of the
 date of approval of this resolution1   
nearly #g1jjj rare diseases affect      
approximately #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 diseases2 ,whereas   
great strides have been made in research
 and treatment for rare diseases as a   
result of the ,orphan ,drug ,act        
7,public ,law #ig-dad2 #if ,stat4 #bjdi7
 and amendments made by that ,act2      
,whereas #bjac marks the #cjth          
anniversary of the ,orphan ,drug ,act   
and therefore a time to reflect upon the
 successes of that ,act and the         
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 was 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 and ,whereas ,rare
 ,disease ,day is anticipated to be     
observed globally for years to come1    
providing hope and information for rare 
disease patients around the world2 ,now1

 therefore1 be it  ,that the ,senate--  
7#a7 designates ,february #bh1 #bjac1 as
 ,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