,i  #aag? ,,congress  #a/ ,session  ,h4 
,r4 #bed  ,,9 ,,! ,,h\se ,,(            
,,repres5tatives  ,janu>y #aa1 #bjba,ms4
 ,lee ( ,cali=nia introduc$ ! foll[+    
bill2 :i* 0 ref]r$ to ! ,committee on   
,en]gy & ,comm]ce  ,a ,,bill  ,to am5d !
 ,public ,heal? ,s]vice ,act to create a
 ,national ,neuromyelitis ,optica       
,spectrum ,disord] ,consortium to       
provide grants1 coord9ate syn]gi/ic     
rese>*1 & t>get$ !rapy ) respect to !   
causes (1 & risk factors associat$ )1   
neuromyelitis optica spectrum disord]1 &
 = o!r purposes4  #a4 ,%ort title ,?is  
,act may be cit$ z ! ,neuromyelitis     
,optica ,spectrum ,disord] ,consortium  
,act4  #b4 ,f9d+s ,congress f9ds !      
foll[+3 7#a7 ,neuromyelitis optica      
spectrum disord] 79 ?is section &       
section #c ref]r$ to z ,,nmosd7 is a    
deva/at+ neurologic disease lead+ to    
bl9dness1 p>alysis1 & premature dea?4   
7#b7 ,!re are an e/imat$ #af1jjj to     
#ag1jjj p ) ,,nmosd 9 ! ,unit$ ,/ates & 
m ?an a qu>t]-million pati5ts worldwide4

  7#c7 ,wom5 are affect$ up to #g times 
m ?an m51 & ,afro-,c>ibbeans & ,lat9o   
p]sons are ab\t #b4e times m pr$ispos$  
to ,,nmosd ?an ,caucasians4 ,! reasons  
:y ,blacks & ,hispanics are             
disproportionately affect$ _c be fully  
und]/ood )\t fur!r /udies4 ,fur!rmore1  
:y ,,nmosd disproportionately occurs 9  
females is unkn[n4  7#d7 ,! av]age age  
at diagnosis is approximately #ce to #de
 ye>s1 a peak w9d[ ( "t t fur!r comp\nds
 ! burd5 ( ,,nmosd on p>5?ood & c>e]s ( 
wom5 & m54 ,! age range ( ,,nmosd       
pati5ts is broad & includes *ildr5 z "y 
z #c ye>s ( age & adults z old z #ij4   
7#e7 ,,nmosd imposes sub/antial co/s =  
affect$ pati5ts & _! families bo? 9     
f9ancial co/s su* ^? associat$ ) m$ical 
c>e1 prescription m$ic9es1 & em]g5cy    
room visits1 z well z 9 opportunity co/s
 su* z its negative impact on ma9ta9+   
ga9ful employm5t or att5d+ s*ool or c>e]
 developm5t programs4  7#f7 ,! orig9s ( 
,,nmosd are unkn[n1 b x is hypo!siz$ to 
be autoimmune 9 nature4 ,collectively1  

autoimmune diseases curr5tly affect     
approximately #a 9 #aj ,am]icans4 ,)\t a
 cle> und]/&+ ( ! causes ( ,,nmosd1     
developm5t ( cures t save & improve     
lives & r$uce ! sub/antial associat$    
heal? c>e co/s w n be possible4  7#g7   
,despite ! rec5t ,food & ,drug          
,adm9i/ration approval ( ?ree m$ications
 = ,,nmosd1 !re rema9s an unmet ne$ = m 
effective & safe !rapies to sp>e ^!     
pati5ts f ?is recurr5t disease ) its    
accumulat+ neurologic disability4  7#h7 
,because ( _! relatively l[ ov]all      
incid5ce1 orphan diseases l ,,nmosd     
frequ5tly d n receive suffici5t att5tion
 & rese>* fund+4 ,( special importance  
is ! opportunity = ! rem>kable progress 
made rec5tly reg>d+ ,,nmosd to s]ve z-- 
7,a7 a model = solutions to r>e &       
immunologic diseases2 &  7,b7 an        
exempl>y !rapeutic disease t>get =      
immunosuppressive !rapies & = det]m9+   
vacc9ation b5efits & risks relative to  
,,covid-#ai4  7#i7 ,no s+le in/itution  
has a suffici5t numb] ( pati5ts to      

indep5d5tly conduct rese>* t w          
adequately address ! cause1 prev5tion1  
treatm5t1 & pot5tial cure ( ,,nmosd4    
,fur!rmore1 !re is a paucity ( res\rces 
available = reg5]ative m$ic9e rese>* 9  
,,nmosd t w be requir$ to repair optic  
n]ve & sp9al cord damage caus$ by       
,,nmosd & ?us to re/ore heal?4  7#aj7   
,!re has be5 no compreh5sive /udy       
analyz+ all relevant cl9ical1           
biological1 & epidemiological aspects ( 
,,nmosd to id5tify pot5tial risk factors
 & biom>k]s = ,,nmosd4  7#aa7 ,we c     
apply our und]/&+ ( ,,nmosd to ! /udy ( 
o!r autoimmune diseases1 includ+ type #a
 diabetes mellitus1 rheumatoid ar?ritis1
 psoriasis1 multiple scl]osis1 sy/emic  
lupus ery!matosus1 & _m o!rs4  #c4 ,s5se
 ( ,congress ,x is ! s5se ( ,congress   
t-- 7#a7 !re is a ne$ to e/abli% &      
coord9ate a syn]gi/ic1 multic5t] rese>* 
ef=t bas$ on collaboration betwe5       
regional consortia & gov]nm5tal &       
nongov]nm5tal entities 9 ord] to-- 7,a7 
compreh5sively /udy ! causes ( ,,nmosd2 

7,b7 id5tify pot5tial biom>k]s ( disease
 activity2  7,c7 lev]age rec5t ef=ts 9  
develop+ approv$ !rapies = ,,nmosd z a  
model = develop+ break?r\gh !rapies =   
o!r autoimmune diseases2 &  7,d7        
highlight ,,nmosd z a model disease to  
bett] und]/& ! pot5tial b5efits & risks 
( immunosuppressive !rapy & innovative  
vacc9e /rategies t>get+ ,,covid-#ai2    
7#b7 !re is a ne$ to enc\rage a         
collaborative ef=t among academic m$ical
 c5t]s compris+ epidemiological /udy    
gr\ps capable ( ga!r+ compreh5sive &    
detail$ in=mation = ea* pati5t enroll$ 9
 ^? gr\ps2 &  7#c7 ! ef=t ref]r$ to 9   
p>agraph 7#b7 %\ld facilitate           
inve/igation ( environm5tal1            
nutritional1 g5etic1 & treatm5t factors 
) respect to ! pa?ological &            
epidemiological *>act]i/ics ( ,,nmosd4  
#d4 ,e/abli%m5t ( ! ,national           
,neuromyelitis ,optica ,spectrum        
,disord] ,consortium ,"p ,b ( title ,,iv
 ( ! ,public ,heal? ,s]vice ,act 7#db   
,u4,s4,c4 #bhd et seq47 is am5d$ by add+

 aft] section #dji;,j ! foll[+ new      
section3  #dji,k4 ,national             
,neuromyelitis ,optica ,spectrum        
,disord] ,consortium  7a7 ,e/abli%m5t ( 
! ,national ,neuromyelitis ,optica      
,spectrum ,disord] ,consortium  7#a7 ,9 
g5]al ,n lat] ?an #a ye> aft] ! date ( !
 enactm5t ( ?is section1 ! ,secret>y1   
act+ ?r\gh ! ,director ( ,,nih1 & 9     
coord9ation ) ! ,director ( ! ,national 
,in/itute on ,m9ority ,heal? & ,heal?   
,disp>ities1 %all e/abli%1 adm9i/]1 &   
coord9ate a ,national ,neuromyelitis    
,optica ,spectrum ,disord] ,consortium  
79 ?is section ref]r$ to z ! ,,nmosd    
,consortium7 = ! purposes describ$ 9    
p>agraph 7#b74  7#b7 ,purposes ,!       
purposes ( ! ,,nmosd ,consortium %all be
 ! foll[+3 7,a7 ,provid+ grants ( n less
 ?an #e-ye>s' duration to eligible      
consortia = ! purpose ( conduct+ rese>* 
) respect to ! causes (1 risk factors & 
biom>k]s associat$ )1 & treatm5t ( &    
comorbidities associat$ )1 ,,nmosd4     
7,b7 ,assembl+ a panel ( exp]ts to      

provide1 ) respect to rese>* fund$ by ! 
,,nmosd ,consortium1 ongo+ guidance &   
recomm5dations = ! developm5t ( !       
foll[+3 7i7 ,a /&>diz$ /udy design1     
includ+ adaptive cl9ical trial /ructures
 t may quickly & effici5tly evaluate    
multiple treatm5t regim5s to optimize   
precision & effectively assess          
p]sonaliz$ m$ic9e 9 r>e & immunologic   
diseases4  7ii7 ,/&>d protocols1 me?ods1
 proc$ures1 & assays = collect+ f       
individuals enroll$ z /udy p>ticipants a
 m9imum dataset t includes ! foll[+3    
7,i7 ,complete m$ical hi/ory1 includ+   
autoimmune & nonautoimmune              
comorbidities4  7,,ii7 ,neurologic      
exam9ation & /&>dization ( critical     
cl9ical outcomes su* z ! def9ition &    
adjudication ( relapse 9 ,,nmosd4       
7,,iii7 ,biospecim5s1 includ+ s]um1     
blood cells1 c]ebrosp9al fluid1 ,,dna1 &
 ,,rna4  7,,iv7 ,radiological data1     
includ+ magnetic resonance imag+ 7,,mri7
 & optical coh]5ce tomography1 among o!r
 modalities4  7iii7 ,specific analytical

 me?ods = exam9+ data1 includ+          
bio9=matic & computational model+ =     
det]m9i/ic z well z pr$ictive           
capabilities4  7iv7 ,provisions =       
cons5sus review ( enroll$ cases1 includ+
 cl9ical trial data z well z (f-label   
drug use & epidemiologic /udies t w\ld  
be (f] great] insights if consid]$ 9    
aggregate ?an alone4  7v7 ,an integrat$ 
data collection network1 includ+ regi/ry
 & o!r activities t improve sci5tific & 
cl9ical effici5cies 9 a*iev+ ! purposes 
outl9$ 9 ?is p>agraph4  7,c7 ,designat+ 
a consortium-d$icat$ laboratory to      
collect1 analyze1 & aggregate data )    
respect to rese>* fund$ by ! ,,nmosd    
,consortium & to make su* data &        
analysis available to rese>*]s4  7#c7   
,eligible consortia ,to be eligible = a 
grant "u ?is section1 a consortium %all 
demon/rate ! foll[+3 7,a7 ,! consortium 
has ! capability to enroll z rese>*     
p>ticipants a m9imum ( #be individuals )
 a diagnosis ( ,,nmo f ! consortium's   
designat$ cat*m5t area4  7,b7 ,!        

designat$ cat*m5t area ( ! consortium   
does n ov]lap ) ! designat$ cat*m5t area
 ( ano!r consortium already receiv+ a   
grant "u ?is section4  7#d7 ,report ,n  
lat] ?an #a ye> aft] ! date ( ! enactm5t
 ( ?is section1 & annually !reaft]1 !   
,secret>y1 act+ ?r\gh ! ,director (     
,,nih1 %all submit to ,congress a report
 ) respect to ! ,,nmosd ,consortium1 to 
be made publicly available1 includ+ a   
summ>y ( rese>* fund$ by ! ,,nmosd      
,consortium & a li/ ( consortia receiv+ 
grants ?r\gh ! ,,nmosd ,consortium4 ,at 
! discretion ( ! ,secret>y1 su* report  
may be comb9$ ) o!r simil> or exi/+     
reports4  7#e7 ,au?orization (          
appropriations  7,a7 ,9 g5]al ,!re is   
au?oriz$ to be appropriat$ #be1jjj1jjj =
 ea* ( fiscal ye>s #bjba ?r\gh #bjbd1 to
 rema9 available until exp5d$1 to c>ry  
out ?is section4  7,b7 ,s5se ( ,congress
 ,x is ! s5se ( ,congress t funds       
appropriat$ to c>ry out ?is section %\ld
 be 9 addition to funds o!rwise         
available or appropriat$ to c>ry out !  

activities describ$ 9 ?is section4  7b7 
,def9itions ,= purposes ( ?is section3  
7#a7 ,cat*m5t area ,! t]m cat*m5t area  
means a def9$ area = :i* population data
 are available4  7#b7 ,consortium ,! t]m
 consortium means a p>tn]%ip ( two or m 
univ]sities1 heal? c>e organizations1 or
 gov]nm5t ag5cies1 or any comb9ation (  
su* entities1 s]v+ a designat$ cat*m5t  
area4  4