,,ii  #aacth ,,congress  #ast ,session  
,s4 #abci  ,,in ,,the ,,senate ,,of     
,,the ,,united ,,states  ,june #bg1     
#bjac ,mrs4 ,gillibrand introduced the  
following bill2 which was read twice and
 referred to the ,committee on ,health1 
,education1 ,labor1 and ,pensions  ,a   
,,bill  ,to expand the research and     
awareness activities of the ,national   
,institute of ,arthritis and            
,musculoskeletal and ,skin ,diseases and
 the ,centers for ,disease ,control and 
,prevention with respect to scleroderma1
 and for other purposes4  #a4 ,short    
title ,this ,act may be cited as the    
,scleroderma ,research and ,awareness   
,act4  #b4 ,findings ,the ,congress     
finds as follows3  7#a7 ,scleroderma is 
a chronic1 disabling and often fatal    
autoimmune disease in which the body's  
soft tissues contract and harden due to 
an overproduction of collagen4  7#b7    
,scleroderma causes damage to one or    
more of the body's organ systems1       
including the skin1 heart1 lungs1       

kidneys1 gastrointestinal tract1 and    
blood vessels4  7#c7 ,it is estimated   
that #cjj1jjj people in the ,united     
,states suffer from scleroderma1 #hj    
percent of whom are women often         
diagnosed during their child bearing    
years4  7#d7 ,choctaw ,native           
,americans1 ,african-,americans1 and    
,hispanics are disproportionately       
affected by scleroderma and tend to     
exhibit more rapidly progressing and    
severe cases of the disease4  7#e7 ,the 
causes of scleroderma are unknown4  7#f7
 ,scleroderma is associated with many   
other conditions including pulmonary    
hypertension1 gastroparesis1 ,raynaud's 
phenomenon1 ,sjgren's ,syndrome and     
lupus4  7#g7 ,the estimated total annual
 economic impact of scleroderma in the  
,united ,states is in excess of         
#a1ejj1jjj1jjj4  7#h7 ,annual ,federal  
support for scleroderma research at the 
,national ,institutes of ,health is     
currently estimated at #bj1jjj1jjj4  #c4
 ,national institute of arthritis and   

musculoskeletal and skin diseases2      
scleroderma research expansion  7a7 ,in 
general ,the ,director of ,the ,national
 ,institute of ,arthritis and           
,musculoskeletal and ,skin ,diseases    
shall expand1 intensify1 and coordinate 
the activities of the ,institute with   
respect to scleroderma1 with particular 
emphasis on the following areas3  7#a7  
,research focused on the etiology of    
scleroderma and the development of new  
treatment options4  7#b7 ,clinical      
research to evaluate new treatments     
options4  7#c7 ,basic research on the   
relationship between scleroderma and    
secondary conditions such as pulmonary  
hypertension1 gastroparesis1 ,raynaud's 
phenomenon1 ,sjgren's ,syndrome 7and    
other diseases as determined by the     
,director74  7#d7 ,establishment of     
scleroderma patient registries1         
including family and childhood onset    
registries4  7#e7 ,support for training 
of new clinicians and investigators with
 expertise in scleroderma4  7b7         

,biennial reports ,as a part of the     
biennial report made under section #djc 
of the ,public ,health ,service ,act    
7#db ,u4,s4,c4 #bhc71 the ,secretary    
shall include information on the status 
of scleroderma research at the ,national
 ,institutes of ,health4  7c7           
,authorization of appropriations  7#a7  
,in general ,for the purpose of carrying
 out subsection 7a71 there are          
authorized to be appropriated           
#be1jjj1jjj in fiscal year #bjad1       
#cj1jjj1jjj in fiscal year #bjae1 and   
#ce1jjj1jjj in fiscal year #bjaf4  7#b7 
,reservations ,of the amounts authorized
 to be appropriated under paragraph     
7#a71 not more than #ae percent shall be
 reserved for the training of qualified 
health professionals in biomedical      
research focused on scleroderma4  #d4   
,promoting public awareness of          
scleroderma  7a7 ,in ,general ,the      
,secretary1 acting through the ,director
 of the ,centers for ,disease ,control  
and ,prevention1 shall carry out an     

educational campaign to increase public 
awareness of scleroderma4 ,print1 video1
 and ,web-based materials distributed   
under this program may include--  7#a7  
basic information on scleroderma and its
 symptoms2  7#b7 information on the     
incidence and prevalence of scleroderma2
  7#c7 diseases and conditions          
affiliated with scleroderma2 or  7#d7   
the importance of early diagnosis and   
treatment4  7b7 ,dissemination of       
,information ,the ,secretary is         
encouraged to disseminate information   
under subsection 7a7 through a          
cooperative agreement with a national   
nonprofit entity with expertise in      
scleroderma4  7c7 ,report to ,congress  
,not later than ,september #cj1 #bjac1  
the ,secretary shall report to the      
,committees on ,health1 ,education1     
,labor1 and ,pensions and               
,appropriations of the ,senate and the  
,committees on ,energy and ,commerce and
 ,appropriations of the ,house of       
,representatives on the status of       

activities under this section4  7d7     
,authorization of ,appropriations ,for  
the purpose of carrying out this        
section1 there is authorized to be      
appropriated #b1ejj1jjj for each of     
fiscal years #bjad1 #bjae1 and #bjaf4