,,iii  #aaeth ,,congress  #ast ,session 
,s4 ,,res4 #gc  ,,in ,,the ,,senate ,,of
 ,,the ,,united ,,states  ,february #bh1
 #bjag,mr4 ,brown 7for himself1 ,mr4    
,barrasso1 ,mr4 ,whitehouse1 ,ms4       
,warren1 ,mr4 ,markey1 ,mr4 ,coons1 ,mr4
 ,wicker1 ,mr4 ,van ,hollen1 ,ms4       
,stabenow1 ,mrs4 ,feinstein1 ,ms4       
,klobuchar1 ,mr4 ,hatch1 and ,mr4       
,booker7 submitted the following        
resolution2 which was considered and    
agreed to  ,,resolution  ,designating   
,february #bh1 #bjag1 as ,rare ,disease 
,day4  ,whereas a rare disease or       
disorder is one that affects a small    
number of patients and1 in the ,united  
,states1 typically fewer than #bjj1jjj  
individuals annually are affected by a  
rare disease or disorder2 ,whereas1 as  
of ,february #bjag1 nearly #g1jjj rare  
diseases affect approximately           
#cj1jjj1jjj people in the ,united       
,states and their families2 ,whereas    
children with rare genetic diseases     
account for approximately #a_/b of the  

population affected by rare diseases in 
the ,united ,states2 ,whereas many rare 
diseases are serious and                
life-threatening and lack effective     
treatments2 ,whereas1 as a result of    
,federal laws like the ,orphan ,drug    
,act 7,public ,law #ig-dad2 #if ,stat4  
#bjdi71 there have been important       
advances made in research on1 and       
treatment for1 rare diseases2 ,whereas  
the ,food and ,drug ,administration has 
made great strides in gathering patient 
perspectives to inform the drug review  
process as part of the ,patient-,focused
 ,drug ,development program1 an         
initiative that originated under the    
,food and ,drug ,administration ,safety 
and ,innovation ,act 7,public ,law      
#aab-add2 #abf ,stat4 #iic72 ,whereas1  
although nearly #fjj drugs and          
biological products for the treatment of
 rare diseases have been approved by the
 ,food and ,drug ,administration1       
millions of people in the ,united       
,states have a rare disease for which   

there is no approved treatment2 ,whereas
 lack of access to effective treatments 
and difficulty in obtaining             
reimbursement for life-altering1 and    
even life-saving1 treatments remain     
significant challenges for people with  
rare diseases and their families2       
,whereas rare diseases and conditions   
include ,von ,hippel-,lindau syndrome1  
fibrous dysplasia1 sickle cell anemia1  
spinal muscular atrophy1 ,duchenne      
muscular dystrophy1 dermatomyositis1    
cystic fibrosis1 ,friedreich's ataxia1  
many childhood cancers1 amyotrophic     
lateral sclerosis1 epidermolysis        
bullosa1 frontotemporal dementia1 and   
metachromatic leukodystrophy2 ,whereas  
people with rare diseases experience    
challenges that include-- 7#a7          
difficulty in obtaining accurate        
diagnoses2  7#b7 limited treatment      
options2 and  7#c7 difficulty finding   
physicians or treatment centers with    
expertise in the rare diseases2         
,whereas the rare disease community     

gained important new tools during the   
#aadth ,congress with the passage of the
 #bast ,century ,cures ,act 7,public    
,law #aad-bee71 which--  7#a7           
streamlines the review by the           
,commissioner of ,food and ,drugs of    
genetically targeted therapies2  7#b7   
incentivizes the development of rare    
pediatric disease therapies2  7#c7      
strengthens pediatric medical research2 
and  7#d7 adds billions of dollars of   
funding for the ,national ,institutes of
 ,health2  ,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 ,disorders 7referred to in this  
preamble as ,,nord71 a nonprofit        
organization established in #aihc to    
provide services to1 and advocate on    
behalf of1 patients with rare diseases1 
remains a critical public voice for     
people with rare diseases2 ,whereas     

#bjag marks the #cdth anniversary of the
 enactment of the ,orphan ,drug ,act    
7,public ,law #ig-dad2 #if ,stat4 #bjdi7
 and the establishment of ,,nord2       
,whereas ,,nord sponsors ,rare ,disease 
,day in the ,united ,states and partners
 with many other major rare disease     
organizations 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 was
 observed in more than #he countries in 
#bjaf2 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 #bjag1 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 to and   
developing new treatments1 diagnostics1 
and cures for rare diseases and         
disorders4