,i  #aafth ,,congress  #b;d ,session    
,h4 ,r4 #fbch  ,,in ,,the ,,house ,,of  
,,representatives  ,march #ab1 #bjbj,mr4
 ,gottheimer 7for himself and ,mr4      
,upton7 introduced the following bill2  
which was referred to the ,committee on 
,ways and ,means1 and in addition to the
 ,committee on ,energy and ,commerce1   
for a period to be subsequently         
determined by the ,speaker1 in each case
 for consideration of such provisions as
 fall within the jurisdiction of the    
committee concerned  ,a ,,bill  ,to     
amend the ,internal ,revenue ,code of   
#aihf to restore the amount of the      
orphan drug tax credit1 and for other   
purposes4  #a4 ,short title ,this ,act  
may be cited as ,cameron's ,law4  #b4   
,restoration of amount of orphan drug   
tax credit  7a7 ,in general ,section    
#de;,c7a7 of the ,internal ,revenue     
,code of #aihf is amended by striking   
#be percent and inserting #ej percent4  
7b7 ,effective date ,the amendment made 
by this section shall apply to taxable  

years beginning after the date of the   
enactment of this ,act4  #c4 ,,cdc study
 on surveillance infrastructure for rare
 diseases and conditions  7a7 ,study    
,not later than #a year after the date  
of enactment of this ,act1 the ,director
 of the ,centers for ,disease ,control  
and ,prevention 7in this section        
referred to as the ,director7 shall     
complete a study on enhancing and       
expanding the infrastructure to track   
the epidemiology of rare diseases and   
conditions1 including with respect to   
the following3 7#a7 ,rates of mortality4
  7#b7 ,potential for research and      
treatment4  7#c7 ,demographics4  7#d7   
,diagnosis and progression markers4     
7#e7 ,the history of the disease or     
condition4  7#f7 ,detection management4 
7b7 ,consultation ,in conducting the    
study required by subsection 7a71 the   
,director shall consult with relevant   
experts1 including-- 7#a7               
epidemiologists with experience in      
disease surveillance2  7#b7             

representatives of national voluntary   
health associations2  7#c7 health       
information technology experts or other 
information management specialists2     
7#d7 clinicians with expertise in rare  
diseases or conditions2  7#e7 research  
scientists with expertise in rare       
diseases or conditions1 or experience   
conducting translational research or    
utilizing surveillance systems for      
scientific research purposes2 and  7#f7 
patients1 and caregivers of patients1   
with rare diseases or conditions4  7c7  
,report ,not later than #c months after 
completing the study required by        
subsection 7a71 the ,director shall     
submit a report to the ,congress on the 
results of the study4  7d7 ,definition  
,in this section1 the terms rare        
diseases and conditions and rare        
diseases or conditions refer to human   
diseases and conditions that are-- 7#a7 
a rare disease or condition1 as defined 
in section #ebf of the ,federal ,food1  
,drug1 and ,cosmetic ,act 7#ba ,u4,s4,c4

 #cfj;bb72 or  7#b7 determined by the   
,director to be rare and lacking in     
treatment options1 so as to warrant     
consideration in the study required by  
subsection 7a74