,,iii  #aacth ,,congress  #b;d ,session 
,s4 ,,res4 #cfh  ,,in ,,the ,,senate    
,,of ,,the ,,united ,,states  ,february 
#bg1 #bjad ,mr4 ,brown 7for himself1    
,mr4 ,barrasso1 ,mr4 ,wicker1 ,mr4      
,coons1 ,mr4 ,bennet1 ,mr4 ,whitehouse1 
,mrs4 ,feinstein1 ,mr4 ,pryor1 and ,ms4 
,warren7 submitted the following        
resolution2 which was considered and    
agreed to  ,,resolution  ,designating   
,february #bh1 #bjad1 as ,rare ,disease 
,day4  ,whereas a rare disease or       
disorder is one that affects a small    
number of patients - in the ,united     
,states1 typically less than #bjj1jjj   
individuals annually2 ,whereas 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 great strides have  
been made in research and treatment for 
rare diseases as a result of the ,orphan
 ,drug ,act 7,public ,law #ig-dad72     
,whereas the ,food and ,drug            
,administration has made 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 ,act 7,public   
,law #aab-add72 ,whereas a third of all 
treatments approved by the ,food and    
,drug ,administration in #bjac were     
orphan products intended to treat rare  
diseases2 ,whereas lack of access to    
effective treatments and difficulty in  
obtaining reimbursement for             
life-altering1 and even life-saving1    
treatments still exist and remain       
significant challenges for the rare     
disease community and their families2   
,whereas rare diseases and conditions   

include epidermolysis bullosa1 progeria1
 sickle cell anemia1 spinal muscular    
atrophy 7,,sma71 ,duchenne muscular     
dystrophy 7,,dmd71 ,tay-,sachs1 cystic  
fibrosis1 pulmonary fibrosis1 many      
childhood cancers1 and fibrodysplasia   
ossificans progressiva2 ,whereas people 
with rare diseases experience challenges
 that include difficulty in obtaining   
accurate diagnoses1 limited treatment   
options1 and difficulty finding         
physicians or treatment centers with    
expertise in their diseases2 ,whereas   
the rare disease community made great   
strides in #bjac1 including the passage 
of the ,national ,pediatric ,research   
,network ,act 7,public ,law #aac-ee71   
which calls special attention to rare   
diseases and directs the ,national      
,institutes of ,health to facilitate    
greater collaboration among researchers2
 ,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
 to and advocate on behalf of patients  
with rare diseases1 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 observed
 each year on the last day of ,february2
 ,whereas ,rare ,disease ,day is a      
global event1 first observed in the     
,united ,states on ,february #bh1 #bjji1
 and observed in #fj countries in #bjac2
 and ,whereas ,rare ,disease ,day is    
expected to be observed globally for    
years to come1 providing hope and       
information for rare disease patients   

around the world3 ,now1 therefore1 be it
  ,that the ,senate--  7#a7 designates  
,february #bh1 #bjad1 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 for rare diseases and         
disorders4